Support needs of patients with COPD: a systematic literature search and narrative review

International Journal of Chronic Obstructive Pulmonary Disease, Mar 2018

Support needs of patients with COPD: a systematic literature search and narrative review A Carole Gardener,1 Gail Ewing,2 Isla Kuhn,3 Morag Farquhar4 1Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK; 2Centre for Family Research, University of Cambridge, Cambridge, UK; 3University of Cambridge Medical School Library, University of Cambridge, Cambridge, UK; 4School of Health Sciences, University of East Anglia, Norwich, UK Introduction: Understanding the breadth of patients’ support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care.Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted.Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent.Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP). Keywords: COPD, person-centered care, support needs

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Support needs of patients with COPD: a systematic literature search and narrative review

International Journal of COPD Support needs of patients with COPD: a systematic literature search and narrative review A Carole Gardener 2 3 Gail ewing 1 2 Isla Kuhn 0 2 Morag Farquhar 2 4 0 University of Cambridge Medical School Library, University of Cambridge , Cambridge , UK 1 Centre for Family Research, University of Cambridge , Cambridge , UK 2 (Ovid) , EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched 3 Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge , Cambridge , UK 4 School of Health Sciences, University of east Anglia , Norwich , UK 8 1 0 2 - l u J - 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF PowerdbyTCPDF(ww.tcpdf.org) Introduction: Understanding the breadth of patients' support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care. Methods: We conducted a systematic search and narrative review of the literature. Medline for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted. Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent. Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP). COPD; person-centered care; support needs - open access to scientific and medical research Introduction Patients in the advanced stage of chronic obstructive pulmonary disease (COPD) can experience a range of debilitating physical symptoms, resulting in a loss of functionality and high levels of psycho-social distress.1–4 National strategy documents5,6 highlight the need to address individual physical, psychological, social, and spiritual needs experienced by these patients through holistic supportive input delivered through personcentered care. Understanding the patient’s view on their support needs (those aspects of managing life with COPD with which they need support, eg, support to manage their symptoms or access financial benefits) is key to facilitating this approach. Existing reviews addressing patient perspectives on need in advanced COPD have tended to be focused, for example, on patient difficulties (eg, breathlessness7–9 and isolation7–10) or on patient requirements for specific aspects of supportive input (eg, information8,9 and nursing care8,9). The range of underlying support needs identified by 18 these reviews is therefore limited. Disler et al10 and Spathis l-u02 and Booth7 highlighted patients’ need for support in under-J12 standing COPD and knowing what to expect in the future, on while Gardiner et al8 identified a need for assistance in man.221 aging personal care and practical tasks. Patient need for sup.928 port in relation to accessing aides and adaptions, getting out .33 and about, managing feelings of isolations and depression, y12 and claiming financial benefits have also been reported.7–10 /bm However, none of these existing reviews comprehensively .cso outlines the full range of support needs patients can experirsep ence, limiting our ability to develop evidence-based intervenvoed tions to identify and address patients’ unmet support needs in .ww advanced COPD. Thus, we sought to identify key aspects of ://w support need identified by patients via a systematic review s ttph l.y of the relevant literature in order to determine the full range rom on of support needs for patients with COPD. This review underfd se pins a program of work to develop a designed-for-purpose, de lu loa ona evidence-based tool to help patients with advanced COPD saedonw rrsopeF ipdreonfetisfsyioannadls,exinproersdserthteoirensuapbpleorat nneeeeddss-lwedithcohnevaelrtshatcioarne, facilitating person-centered care. Methods We conducted a systematic review of the literature to identify key aspects of support need in patients with advanced COPD. The search followed the principles of a systematic review, with reference to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines,11 incorporating limiters and adopting a pragmatic approach to the assessment of studies for inclusion in order to expedite delivery. The four authors brought a range of perspectives to the review including palliative care research (MF, GE, and ACG), nursing (MF and GE), social work (ACG), and information specialism (IK). Inclusion criteria The inclusion criteria are outlined in Table 1. e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n tr e n I Types of participants The review considered all studies that involved human subjects who were adult (18 years and older) and diagnosed with COPD. The inclusion of studies relating to patients with COPD, rather than just advanced COPD, followed an initial scoping of the literature which identified a limited number of studies specifically addressing patients’ support needs in advanced disease. Support needs Studies were included if they addressed key aspects of support need, as identified by the patient. In conducting similar work in relation to carers, Ewing and Grande12 described the following three types of data that may indicate support needs: 1) carer support needs that were met, 2) supportive input that was perceived as helpful by carers, and 3) shortfalls in provision where carer needs had not been met. These three types of data were used to guide a framework for the identification of support needs to enable the identification of relevant papers (and data) for this present review: 1) patient support needs that were met (met needs), 2) supportive input that was perceived as helpful by patients (helpful input), and 3) shortfalls in provision where patients’ needs had not been met (unmet needs). Types of studies The review considered studies that included patient perspectives on support need through quantitative, qualitative, or mixed methods research designs. Search strategy The search strategy, developed with our information specialist (IK), comprised the following three stages: 1. Pilot search: an initial search of Medline Ovid was undertaken using keywords and phrases from key articles in the subject area. The terms “COPD” and “need” were found to be the most effective in identifying relevant material. 2. Extended electronic search informed by the pilot search: search terms used are shown in Table 2. For pragmatic 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n tr e n I reasons within this review, search terms were limited to abstract and title only. The search terms were then applied to each of the following electronic databases: Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL. Studies had to be primary research and published in peer review journals. Given the pragmatic nature of the review only studies written in English and published in the previous 20 years (January 1996 to February 2016) were considered. 3. Manual search: reference lists of relevant systematic reviews identified through the search were checked for further potentially relevant papers based on their titles or commentaries within reviews. The three stages of the search strategy comprise the identification step referred to on the PRISMA flow diagram (Figure 1) that summarizes the systematic review process. Abstract selection procedure Titles and abstracts of studies to be considered for retrieval were recorded in an EndNote database along with details of where the reference was found. Titles and abstracts were screened by the lead reviewer (ACG) and those that clearly did not meet the inclusion criteria were excluded by the lead reviewer only. Two reviewers (ACG/MF) independently reviewed the remaining abstracts. Abstracts were assessed for their relevance to the topic, using the framework for the identification of support needs adopted by the review, and outlined earlier: met needs, helpful input, and unmet needs. Discrepancies in the selection process were resolved by discussion prior to data extraction. Assessment of study quality Full copies of articles identified as potentially relevant were obtained and assessed for methodological quality by the lead reviewer (ACG). We used the following five-category rating of Dixon-Woods et al13 to assess study quality using unprompted judgment: KP – key paper to be included in review, SP – satisfactory paper to be included in review, ? – unsure whether paper should be included, FF – paper to be excluded on the grounds of being fatally flawed, and IRR – paper to be excluded in the grounds that it is irrelevant. Records identified through database searching (n=12,501) Additional records identified through other sources (n=5) Records excluded (n=28) Full-text articles excluded, with reasons (n=21) 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I submit your manuscript | www.dovepress.com Dovepress ek et al (2011)36 Sweden Pulmonary specialist clinic Data extraction and synthesis Stage 1 (extraction) Data relating to each of the three types of data in the adopted framework for the identification of support needs were extracted from the included papers onto an Excel spreadsheet, using narrative analysis, by the lead reviewer. A random sample of these papers was also analyzed by the second reviewer (MF), and any disagreements on categorization resolved through discussion. Stage 2 (synthesis) Areas of support need that emerged from the extracted data were subsequently reviewed and revised through team discussion (ACG, MF, and GE). To facilitate presentation, these areas of support need were then mapped to the following four overarching categories of need informed by the national framework document “Ambitions for Palliative and End of Life Care”:5 1) physical, 2) psychological, 3) social, and 4) spiritual. Results The results are presented in two sections: first, details of included studies are summarized and, second, identified areas of support need are presented within the four overarching categories of need. Section 1: overview of included studies The PRISMA flow diagram (Figure 1) summarized the systematic review outcome. Details of the papers included are outlined in Table 3. Thirty-one papers were included in 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I Participant observation In-depth interviews Participant observation In-depth interviews Qualitative: grounded theory Qualitative: narrative Male =5 Semistructured Age range =63–77 years interviews Male =10 Median age =65 years Semistructured interviews Qualitative: hermeneutic phenomenology Qualitative Male =1 Age range =57–58 years Multiple case study methods Male =8 Semistructured Age range =62–83 years interviews saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I Rodgers et al (2007)22 UK Schroedl et al (2014)28 USA Seamark et al (2004)29 UK Skilbeck et al (1998)45 UK white et al (2011)26 UK wilson et al (2008)44 Canada Pulmonary rehabilitation 23 program within a community hospital Academic medical center GP practice Health district GP practices 163 Pulmonary outpatients 12 saedonw rrsopeF of patients with COPD across a range of topics and settings; however, all papers included data related to patient-identified support needs. Section 2: areas of support need organized by overarching categories of need and detailed description The following 13 broad areas of support need (referred to as domains) were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. A detailed description of each is provided below, presented within the four overarching categories of need (physical, psychological, social, and spiritual). Table 4 provides an overview of the 13 identified domains mapped to met needs, supportive inputs, and unmet needs as reported in the literature. Physical The majority of studies included in the review identified support needs in relation to patients’ physical health. Understanding COPD Fourteen studies identified patients’ understanding of the nature of COPD as a key aspect of support, with an important issue being the lack of information provided about their condition.14–27 When they were given information, this was perceived by patients as highly beneficial.14,15,17 A number of studies identified the need for understanding the term COPD,16,22 understanding the nature of lung damage associated with COPD15,25 and greater clarity about COPD at the time of diagnosis.16,18,19,27 Twelve studies identified the desire of some patients to be made aware of how their symptoms would progress in the future and their likely prognosis.16,18,19,21,25,26,28–33 While it was acknowledged that not all patients with COPD wanted to be made aware of the future, it was clear that for many there was a need to understand how long they had to live18,31,32 and the likely nature of their symptoms at the advanced stage of illness.19,26,28,31 Managing symptoms and medication Eleven studies identified patients’ need for support with managing their condition. These studies described how patients valued, or identified, a need for basic information and instruction in relation to 1) coping with symptoms14–17,24,26 (eg, pacing, dealing with panic attacks, and breathing exercises); 2) treatment options20,25,29 and effective use of medication14,20,22,24–26 (eg, correct inhaler technique, when to use standby packs, and nebulizers); and 3) the provision and use of oxygen.34 A number of the studies also reported patients’ need for a more dynamic form of support, particularly in the context of managing exacerbations, emergencies, admissions, and discharge. For example, patients valued guidance as to when to take standby medication or when to go to hospital,20,21,24,32,34 monitoring and feedback about whether or not they were assessing and managing a situation correctly,17,30,32,34,35 and at times, having someone else to take over the responsibility for decision making.15,32,36 Studies also noted the value placed on having easy access to both health care professionals and family members who could be contacted when patients were worried or needed assistance.14,15,32,34,37 Healthy lifestyle Six studies highlighted a need for support in relation to how patients could lead a healthier lifestyle.17,20,22,24,38,39 Three of the studies identified patients’ need for support around exercise and activity in the following areas:17,22,24 1) encouragement to exercise,17,22 2) exercising safely,22 3) identifying and achieving personal activity goals,17 and 4) developing the ability and confidence to use exercise equipment at home.24 Two studies focused on patient support in the context of smoking cessation.38,39 Both studies acknowledged the difficulties involved in stopping smoking but reported patients’ views on key aspects of support patients had found useful or would have welcomed. Patients highlighted the importance of hearing the right words of encouragement at the right time, ongoing praise and encouragement, being made aware of available cessation services, and accessing immediate support when necessary. Three of the studies highlighted a need not to feel blamed for current or previous lifestyle choices.20,38,39 Psychological and emotional The reported need for emotional support by patients with COPD is well documented;8,35,37 however, few authors have focused on identifying in any detail what patients actually need in order to feel emotionally supported. However, the following four key areas of psychological support did emerge from the review: managing feelings and worries, living positively with COPD, thinking about the future, and anxiety and depression, each of which are discussed below. Unmet needs: shortfalls in provision where patient needs were not met Helpful input: supportive input perceived as helpful saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I submit your manuscript | www.dovepress.com Dovepress Inadequate understanding and provision of information about the nature of COPD16,18,21–24 Not understanding, or being familiar with, the terms such as COPD and emphysema16,22 Patient not being fully aware they have a diagnosis of COPD19 Lack of discussion about the nature of COPD19,20,25 Needing a greater understanding about what is happening to the lungs in the context of COPD25 Needing greater clarity about COPD at the time of diagnosis16,18,19,27 Not receiving enough information about prognosis and disease progression18,19,21,25,26,28,31,32 Lack of opportunity to have an in-depth discussion about prognosis with preferred health care professional25,29–31 Inadequate information about management of illness16 Inadequate information about how to control breathlessness or panic attacks24,26 Lack of information about medication and side effects20,26 Respiratory nurses providing information about the nature of illness14 Information sessions within pulmonary rehabilitation classes17 Literature on COPD18 Discussions with health care professionals about prognosis and end of life care (or confidence that HCPs will bring up these issues as appropriate)30,33 Conscious discussions with health care professionals of diagnosis29 Respiratory nurses providing information about breathing techniques and effective use of medication14 Pulmonary rehabilitation provided support in terms of learning to cope with symptoms/using inhalers/breathing exercises15,17,22 More information/support re using inhalers and medication20,22,24 Booklets providing information about Lack of advice re managing exacerbations20 breathing exercises24 Better awareness of treatment options and Specialist nurses being available over the costs and benefits of medication20,25 weekends14 Need for medication to be reviewed25 Support from GP to manage Lack of proactive monitoring30,32 exacerbations32,35 Uncertainty about the provision of medical Proactive monitoring after admission32 support after discharge34 easy access to GPs who can respond to More support to use standby medication calls for assistance14 effectively34 Discussions with health care professionals Lack of knowledge about provision and use of about treatment options29 oxygen and nebulizers34 Guidance and feedback from health care Help knowing what to do, or when to seek professionals about self-management17,35 help, when symptoms deteriorate20,21,24,32,34 Monitoring from GP after hospital Uncertainty about who to contact during admission34 the night34 Having a named HCP or family who will Someone to help make decisions about what to respond to immediate concerns14,15,32,37 take or do when unwell36 Suggestions on how to change lifestyle20 Support to exercise/use own exercise equipment safely at home24 Strategies to facilitate smoking cessation/access to smoking cessation programs38 Provision of a safe environment in which to exercise provided via Pulmonary Rehabilitation classes17,22 Support and encouragement to exercise/stay active offered by physiotherapists at pulmonary rehabilitation classes17,22 encouragement from HCP to stop smoking38 Provision of a nonjudgmental context38 Access to smoking cessation/pulmonary rehabilitation and structured home exercise program38 Unmet needs: shortfalls in provision where patient needs were not met Opportunities to discuss lifestyle choices in a nonjudgmental context20 Helpful input: supportive input perceived as helpful HCP providing praise and support during smoking cessation39 Dealing with feelings of frustration and anxiety22 HCPs providing opportunities to Supporting patient psychologically and share feelings, be listened to, and feel preventing pessimism20 understood14,15,40 HCPs delivering care in a way that is personalized/conveys that the patient is an individual/makes the patient feel cared for/creates a nonjudgmental context27,35,40 Seeing others with COPD coping15 Opportunities for mutual support provided by contact with peers15 Peer support provides opportunities for sharing and validating experiences with understanding others27,35 Support and encouragement to live positively with COPD15,17,22,35 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I Opportunity to address emotions in relation to the future31,40 Information about the availability of community supports and accommodation for people in the advanced stage of illness21 Opportunities to discuss and plan for the future treatment and care19,31,33 submit your manuscript | www.dovepress.com Dovepress 1029 Positive impact of meeting others facing end of life31,40 Access to psychological support and specialist services (talking therapies)15,22 Someone to be the patients’ voice when energy Provision of personal care by family: is insufficient36 medication, dressing, and food and drink preparation30,32,37,42,44 Provision of practical help by family and friends: lifting oxygen tanks, gardening, lifts, housework, and shopping36,37,42–44 Support with personal care provided by professional carers36,44 Lack of information and support to access Support from respiratory nurses to apply financial benefits16,22,30,34,45 for benefits16 Lack of information about housing options21,34 Information provided at pulmonary rehabilitation sessions about accessing benefits22 Lack of transportation to access social and Pulmonary rehabilitation and hospice recreational support37 facilities provide opportunities to meet people and make friends17,22,40 Opportunities to participate in activities via hospice day provision40 Family and friends provide lifts44 Difficulty accessing and obtaining services18 Families and friends accompanying Lack of information about available services16,34 patients to appointment to assist with understanding, making appointments, anxiety, assimilating, and providing information37 Helpful input: supportive input perceived as helpful Social services provision of chairlifts16 e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n tr e n I Living positively with COPD Five studies considered support in relation to the emotional adjustment patients may need to make in order to live with COPD.15,17,22,27,35 In relation to talking to understanding others or experience of accessing peer support, these studies highlight key needs that are addressed by such support: knowing you are not alone in having COPD,27,35 sharing and validating experiences,27,35 letting go of criticism and self-blame,27 and being able to draw on others for encouragement, advice, and strategies to support living in a positive way.15,17,22,35 Thinking about the future In addition to the need for information, noted in the “Understanding COPD” section, two studies highlighted the need to address the emotions surrounding end of life: patients noted, in particular, the value in observing and talking to other submit your manuscript | www.dovepress.com Dovepress patients who were also living with life-limiting conditions.31,40 They reported this helped them to keep end of life issues in perspective and feel more optimistic about the future. As noted in the “Understanding COPD” section, not all patients are comfortable with discussing end of life issues; however, for others, it was important to discuss disease progression and prognosis so they could plan for their future care needs, symptom management, and practical considerations.19,21,26,31,33 Schroedl et al28 found that some patients reported comfort in having made plans for death. Anxiety and depression Despite the high prevalence of anxiety and depression reported within this patient group,41 there is surprisingly little discussion in the literature, beyond the areas discussed earlier, about particular support needs for those with psychological co-morbidities. Ellison et al15 noted a reluctance by study participants to access specialist interventions to manage psychological symptoms, such as medication. In contrast, the value of “talking therapies” was highlighted in three studies.15,22,24 Social The need for support in relation to social issues covers a broad spectrum of difficulties faced by patients with COPD as outlined later. Practical support In the context of managing roles both at home and in the community, there is clear evidence of patients’ need for practical support in the following three key areas: personal care, managing the home and garden, and mobility.30,32,36,37,42–44 Ek et al,36 Odencrants et al,43 and Jackson et al37 describe how patients frequently rely on support with personal hygiene, saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n tr e n I cooking, shopping, cleaning, transport, and other strenuous household tasks in some detail. Finance, legal issues, and housing None of the studies reported patients directly stating a need for support with their finances; however, many patients with COPD claim some form of welfare benefits. There was evidence of patient frustration and concerns over the lack of information and the time required to access financial benefits.16,30,34,45 Being made aware of potential financial benefits was seen as one of the advantages of attending pulmonary rehabilitation.22 In a Canadian study, Jackson et al37 noted that financial benefits were critical for those accessing health care and Lindgren et al27 concluded that access to welfare benefits increased patients’ ability to live in the best way possible. In addition to finances, there was evidence of patient support need in relation to exploring housing options,21,34 and in the context of future planning, the evidence highlights how housing, financial, and legal issues are also important components of this support domain.21,26,31 Families and close relationships The importance patients place on family and close relationships was reported in a number of studies, together with concern about family anxiety and potential strain on relationships when family and friends take on caring roles.14,42 However, there was little discussion by patients of how these relationships could be supported, with just one study drawing attention to carer need for a better understanding of COPD and a further study suggesting that there were mixed views on whether carer support was necessary.22,30 Social and recreational life The value placed by patients on opportunities for social interaction with families and friends underlines the need for support in the face of isolation and loneliness.37,42 Guthrie et al42 evidenced a need for both practical support to maintain existing relationships and interests (eg, transport) and the need for opportunities to develop new support structures. Studies by Gysels and Higginson,17 Rodgers et al,22 and Hayle et al40 considered the nature of social support obtained from attending pulmonary rehabilitation or a day hospice. Benefits of these programs included encouragement to get out of the house, the chance to meet people, the opportunity to make friends, and being able to enjoy the company of others. Independence While for some patients the need for support inevitably resulted in increasing dependency on others, a number of studies drew attention to aspects of support that enable patients to maximize their independence and engagement in the wider community.33,36,42 Ek et al36 and Guthrie et al42 highlighted how support related to independence is frequently understood in terms of accessing equipment and assistive devices. Patients typically used, or expressed a need for, chair-lifts, equipment to help with food preparation, bathroom aids, mobility scooters, and cars.16,32,36,42,43,45 Guthrie et al42 and Ek et al36 concluded that the need for support in maintaining independence through mobility is a key issue. Guthrie et al argued that car ownership provided a “distinct advantage in supporting patients in keeping up leisure pursuits and shopping”,42 and Ek et al36 noted that patients with a mobility scooter had more opportunity to get out of the house thereby expanding both their living space and opportunities for social interaction. A related support need is better understanding about the availability of these resources and assistance to access these resources.16,32,45,46 Navigating services Living with a long-term condition frequently involves navigating a complex system of service providers, appointments, and information with which patients can at times need support.37 As with physical needs, a key theme in the literature is a need for understanding and awareness of the services that could potentially support patients both now and in the future.16,18,21,34 Gruffydd-Jones et al34 and Gore et al16 highlighted patients’ need for a greater awareness of available benefits, housing, and possible options for treatment and care. Gysels and Higginson18 documented the additional difficulties that patients can experience gaining access to services. Jackson et al37 report that, even when patients are in contact with service providers, there can still be a continued need for support to make appointments, process information, put forward views, and facilitate a positive working relationship with health care professionals. They also noted that the presence of family and friends was considered to enhance the quality of interactions with health care systems. Spiritual None of the papers reported support needs that could be directly related to religious considerations, eg, support to access religious services or items, or to ensure that religious requirements and restrictions were observed. With the exception of Hayle et al,40 the papers reviewed did not specifically address existential or value-based needs, although related concerns such as issues of loss and dealing with feelings and worries relating to end of life were raised under psychological needs. 18 Discussion l-02u In this review, we sought to systematically determine the -J21 comprehensive set of domains of support need for patients no with COPD. The review identified wide ranging areas of .212 support that patients need, or value, in order to manage life .298 with COPD. This extracted evidence was synthesized and .33 formulated into 13 domains of patient support need. y12 We identified 31 papers that included data on support /bm needs, as described by patients with COPD. The focus on .sco papers incorporating patients’ views (rather than the views rsep of health care professionals or carers) was adopted to meet vedo the requirements of a wider program of work, underpinned .ww by this review, to develop a designed-for-purpose tool to ://w enable patients with advanced COPD to identify and express s th .y their support needs. Although in this context, it might have p t rom on been expected that terms such as “felt need” and “expressed l fd se need” deriving from Bradshaw’s taxonomy47 would have de lu loa ona been key search terms, it is of note methodologically that, saedonw rrsopeF ionr o“rndeeerdtso”idweenrteifyforuelnedvatnot gpeanpeerrast,ethme oserearrcehletevramnts s“tnuedeide”s reporting patients’ perspectives of support need. Relevant papers included those explicitly investigating the needs of patients with COPD and those exploring patients’ experiences of living with COPD. The data were extracted using a framework that enabled a very inclusive approach to identify a full range of support needs: patients’ support needs that were met (met needs), supportive input that was perceived helpful by patients (supportive input), and shortfalls in provision where patients’ needs had not been met (unmet needs). Synthesizing the extracted data into the domains was generally straightforward. On some occasions, data were found to relate to more than one domain of need, for example, key aspects of support within the domain “finance, work, and housing” were also relevant to the domain “thinking about the future”. Similarly, there was some debate among the review team regarding how to map some of the support needs to the four categories, eg, whether personal care should be considered as social or medical. These differing views reflected the various disciplines represented within the review team and were resolved through discussion, with the focus less on which category was the most appropriate and more on whether the categorization was pertinent from both a medical and social care perspective. Other challenges arose when papers described support in very general terms. One example was the use of the term 1032 submit your manuscript | www.dovepress.com Dovepress e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n tr e n I “emotional support” that was often used without describing what patients actually needed in order to feel emotionally supported. Emotional support was also described in relation to the networks that patients build with their families, peers, and health care professionals. However, as these relationships frequently crossed the boundaries of emotional, social, and practical supports, it was again unclear which aspects of these relationships patients valued in relation to their emotional needs. The findings from this review build on our understanding of patients’ support needs in a number of different ways. First, it moves the literature beyond existing reviews, which predominantly provide accounts of “indicators of need” to conceptualizing support domains, which can be used to identify directly the support needs of patients. Reviews, which identify the impact of living with COPD (eg, depression and loss of functionality), are in themselves very valuable but in so doing highlight only areas indirectly indicating that a patient may need support: they do not identify what they need help with. By focusing on those areas in which patients report directly that they need support, this review provides an alternative approach with potential to enable health care professionals to better understand patient need, as well as supporting patients in identifying and expressing those needs. The review further adds to the understanding of patients’ support needs in COPD by providing a clear evidence base for a comprehensive set of domains of support need. Through summarizing reviews and individual studies, the synthesis of evidence into 13 broad areas of support need has identified a range of additional areas in which patients say they need assistance, for example, exercising safely, navigating services, and overcoming feelings of guilt. These resonate with the physical, psychological, and social support needs of patients with other advanced diseases.48,49 However, it is noteworthy that none of the studies reviewed reported patients’ need for support in relation to spirituality, which has been shown to be important in end of life care for conditions such as cancer.50 This may reflect the differing nature of the course of COPD in comparison to malignant conditions in which people may perceive of themselves as living with, rather than dying from, COPD and has implications for the application of “one size fits all” guidelines.51 The identification of a comprehensive set of domains of support need for patients with COPD also has significance for the delivery of supportive, palliative, and end of life care. The current focus is on using the House of Care Model52 to deliver a person-centered approach to support people with 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I long-term conditions. This model seeks to engage patients to those of the authors and not necessarily those of the NIHR, best manage their condition. Yet, we know that patients have the NHS, or the Department of Health. The funders had no difficulty in articulating their needs.53 The comprehensive role in any of the stages from study design to submission set of support domains identified by this review offers a of the paper for publication. For further information about potential framework to provide visibility of relevant broad SNAP, please contact . areas of support, thus enabling patients to express their needs within the existing House of Care Model. An intervention based on this comprehensive set of support domains is currently undergoing validation to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP).54 Potential limitations to this review include the exclusion of papers published outside the time frame 1996–2016, which may have resulted in aspects of support being overlooked if reported earlier. The broad search terms used in the review allowed the inclusion of a range of qualitative studies in which aspects of support were discussed by patients; however, it is possible that there are qualitative studies with a different emphasis, which also cover areas of support need that were not included. In addition, the known difficulty patients with COPD have in articulating their needs could, in itself, have influenced the range of support needs identified within the studies included in the review; however, this difficulty predominantly relates to clinical contexts. Conclusion This review systematically identifies the comprehensive set of domains of support need for patients with COPD, using the perspectives of those best placed to identify them: the patients themselves. These findings have implications for practice, enabling clinicians to enhance patient support, and for research by providing an evidence base for an intervention to assess the support needs of patients using a personcentered approach. Finally, this review has made clear that there are commonalities but also differences in the situations of patients with COPD and their resultant support needs compared with other life-limiting conditions such as cancer. As such it contributes to the current “refreshing” of the End of Life Care Strategy as the Ambitions for Palliative and End of Life Care,5 which more fully integrates long-term conditions. Acknowledgments This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR). MF was funded by a National Institute for Health Research Career Development Fellowship (grant number: CDF-2012-05-218). The views expressed are Author contributions All authors contributed toward data analysis, drafting and critically revising the paper, gave final approval of the version to be published, and agree to be accountable for all aspects of the work. Disclosure The authors report no conflicts of interest in this work. submit your manuscript | www.dovepress.com Dovepress 1033 8 1 0 2 l u J 2 1 n o 1 2 2 . 8 9 . 2 3 . 3 1 2 y b / m o c . s s e r p e v o d . w w w / / : s p t th l.y rom on f e d s de lu loa ona saedonw rrsopeF e s i D y r a n o m l u P e v it c u tr s b O c i n o r h C f o l a n r u o J l a n o it a n r e t n I PowerdbyTCPDF(w w.tcpdf.org) Publish your work in this journal The International Journal of COPD is an international, peer-reviewed journal of therapeutics and pharmacology focusing on concise rapid reporting of clinical studies and reviews in COPD. Special focus is given to the pathophysiological processes underlying the disease, intervention programs, patient focused education, and self management protocols. This journal is indexed on PubMed Central, MedLine and CAS. The manuscript management system is completely online and includes a very quick and fair peer-review system, which is all easy to use. 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A Carole Gardener, Gail Ewing, Isla Kuhn, Morag Farquhar. Support needs of patients with COPD: a systematic literature search and narrative review, International Journal of Chronic Obstructive Pulmonary Disease, 2018, 1021-1035, DOI: 10.2147/COPD.S155622