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

Figures & data

Table 1 Inclusion criteria

1. Some or all of the participants are patients with COPD

2. Adults (18 years +)

3. Paper includes data identifying support needs in patients with COPD

4. The support needs are identified by patients with COPD

5. Peer reviewed journal

6. Primary research paper

7. English language

Abbreviation: COPD, chronic obstructive pulmonary disease.

Table 2 Medline (Ovid) search strategy

1. (COPD or chronic obstructive pulmonary disease).mp.

2. exp Pulmonary Disease, Chronic Obstructive/

3. (need or needs).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms] (990320)

4. 1 or 2

5. 3 and 4

Date limiters: 1996–2016

Abbreviation: COPD, chronic obstructive pulmonary disease.

Figure 1 PRISMA flow diagram.

Abbreviation: PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Table 3 Characteristics of included studies

Reference (year), country	Recruitment setting	Sample size	Severity of COPD	Participant characteristics	Methods	Analysis
Booth et al (2003)^Citation14 UK	Respiratory clinical within a university teaching hospital	10	3 or 4 on modified MRC 4-point scale	Male =6 Age range =51–80 years	Semistructured interviews	Qualitative: thematic
Cicutto et al (2004)^Citation35 Canada	Community	42	Physician diagnosed COPD Daily symptoms that limit activities	Male =55% Age range =54–74 years	Focus groups	Qualitative: constant comparative
Ek et al (2011)^Citation36 Sweden	Pulmonary specialist clinic	4	COPD as primary diagnosis LTOT (16–18 hours a day)	Male =1 Age range =54–71 years	Longitudinal qualitative interviews	Qualitative: phenomenological hermeneutical
Ellison et al (2012)^Citation15 UK	Community-based COPD outpatient clinic	14	Spirometry confirmed diagnosis of COPD	Male =7 Age range =49–79 years	In-depth semistructured interviews	Qualitative: constant comparative
Gore et al (2000)^Citation16 UK	Chest clinic	50	FEV1 <0.751 At least one admission for hypercapnic respiratory failure	Male =44% Mean age =70.5 years	Semistructured interviews Quality of life tools Document review	Qualitative: thematic
Gullick and Stainton (2006)^Citation38 Australia	Three teaching hospitals	15	Severe emphysema FEV1 range 15%–51%	Male =9 Age range =55–77 years	Semistructured interviews	Qualitative: hermeneutic phenomenology
Guthrie et al (2001)^Citation42 UK	Not reported (sample taken from patients participating in a larger study)	37 (20 at second interview)	Severe COPD	Male =8 Mean age =67 years (sample of 20)	Longitudinal semistructured interviews	Qualitative
Gruffydd-Jones et al (2007)^Citation34 UK	District general hospital	25	Postadmission with a diagnosis of an acute exacerbation of COPD	Male =11 Mean age =76 years	Standardized measures Hospital records Semistructured interviews Focus groups	Quantitative: descriptive statistics Qualitative: interpretive phenomenology
Gysels and Higginson (2009)^Citation17 UK	Hospital respiratory clinics, specialist respiratory nurses’ rounds and consultations, “Breathe Easy” service user meetings, and a GP practice disease register	18	Diagnosis of COPD Daily problems of breathlessness	Male =7 Age range =52–78 years	Participant observation In-depth interviews	Qualitative: grounded theory
Gysels and Higginson (2010)^Citation18 UK	Hospital respiratory clinics, specialist respiratory nurses’ rounds and consultations, Breathe Easy service user meetings, and a GP practice disease	18	Breathlessness as a problematic symptom of COPD	Male =7 Median age: Outpatients =69 years Community =70 years	Participant observation In-depth interviews	Qualitative: narrative
Hayle et al (2013)^Citation40 UK	NHS Trust and independent hospice	8	Primary diagnosis of COPD Accessing specialist palliative care	Male =5 Age range =63–77 years	Semistructured interviews	Qualitative: hermeneutic phenomenology
Hasson et al (2008)^Citation30 UK	Hospital	13	FEV1 <30% or LTOT or noninvasive ventilation Optimal drug therapy	Male =10 Median age =65 years	Semistructured interviews	Qualitative
Jackson et al (2012)^Citation37 Canada	Acute care nursing unit during admission	4	Diagnosis of COPD	Male =1 Age range =57–58 years	Multiple case study methods	Qualitative: thematic
Jones et al (2004)^Citation32 UK	Primary care practices	16	Maximal therapy for COPD Considered to be in last year of life	Male =8 Age range =62–83 years	Semistructured interviews	Qualitative: thematic
Lindgren et al (2014)^Citation27 Norway	Three GP practices and an outpatient pulmonary rehabilitation clinic	8	Diagnosed with mild or moderate COPD	Male =3 Age range =60–74 years	Semistructured interviews	Qualitative: phenomenological hermeneutic
Lowey et al (2013)^Citation33 USA	Two Medicare-certified home health agencies	10	Oxygen-dependent COPD	Not reported	Semistructured interviews	Qualitative: thematic
MacPherson et al (2013)^Citation19 UK	GP practice and hospital respiratory team	10	Severe COPD (Gold Standards Framework criteria)	Male =9 Age range =58–86 years	Semistructured interviews	Qualitative: grounded theory
McDonald et al (2013)^Citation25 Australia	Hospital-based respiratory ambulatory care clinics based	7	Confirmed diagnosis of COPD FEV1% predicted mean =44	Male =3 Mean age =68.7 years	In-depth semistructured interviews	Qualitative: thematic
Nykvist et al (2014)^Citation39 Sweden	Primary care	6	Diagnosis of COPD	Female =6 Age not reported	Narrative interviews	Qualitative: narrative
Odencrants et al (2005)^Citation43 Sweden	Five primary health care clinics	13	A diagnosis of COPD according to ICD-10 FEV1 <50%	Male =5 Mean age =68.9 years	Self-reported diary Semistructured interviews	Qualitative: content
Oliver (2001)^Citation24 UK	One GP practice and a district general hospital	17	Diagnosis of COPD FEV1 <50% of predicted value	Male =12 Age range =59–75 years	Semistructured interviews	Qualitative: thematic
Partridge et al (2011)^Citation20 UK, France Italy, Spain Germany	Prerecruited panel who had agreed to take part in research opinion studies	719	MRC score >3	Male (%) =30.5 Mean age =62.4 years	Quantitative questionnaire- based survey	Quantitative
Philip et al (2012)^Citation21 Australia	Respiratory outpatient hospital in a tertiary hospital	10	COPD Recent admission for a life-threatening exacerbation	Male =6 Age range =55–76 years	In-depth semistructured interviews	Qualitative: thematic
Rodgers et al (2007)^Citation22 UK	Pulmonary rehabilitation program within a community hospital	23	COPD patients who had attended pulmonary rehabilitation	Male =14 Mean age for each focus group (×4): 65, 68, 63, 70	Focus groups	Qualitative: template
Schroedl et al (2014)^Citation28 USA	Academic medical center	20	History of COPD Hospital admission following exacerbation	Male =9 Age range =52–83 years	Semistructured interviews	Qualitative: thematic
Seamark et al (2004)^Citation29 UK	GP practice	10	Diagnosis of COPD FEV1 <40% predicted	Male =9 Age range =57–85 years	Semistructured interviews	Qualitative: interpretive phenomenological
Skilbeck et al (1998)^Citation45 UK	Health district	63	Diagnosis of chronic bronchitis, emphysema, chronic asthma, pneumoconiosis, bronchiectasis, nonspecific COAD; admission in last 6 months with exacerbation for 7+ days	Male =33 Age range =55–80 years	In-depth interviews Quality of life/resource use questionnaires	Qualitative: content Quantitative: descriptive statistics
White et al (2011)^Citation26 UK	GP practices	163	Diagnosis of COPD Two of the following: FEV1 <40%, hospital admission for COPD in last 12 months, long-term oxygen therapy, corpulmonale, use of oral steroids, housebound	Male =50% Mean age =71.63	Interview study	Quantitative: statistical analysis Qualitative: thematic
Wilson et al (2008)^Citation44 Canada	Pulmonary outpatients	12	Diagnosis of COPD, chronic bronchitis or emphysema; hospital admission for exacerbation in last 12 months; continuous oxygen, and considered to be in last year of life	Not reported	Longitudinal semistructured interviews	Qualitative: constant comparison
Wortz et al (2012)^Citation23 USA	Subset of existing trial within university health science center	47	Physician diagnosis of COPD	Male =53% Mean age =68.4	In-depth interviews	Qualitative: thematic

Abbreviations: COAD, chronic obstructive airways disease; COPD, chronic obstructive pulmonary disease; FEV₁, forced expiratory volume in 1 second; GP, general practitioner; ICD-10, International Classification of Disease – version 10; LTOT, long-term oxygen therapy; MRC, Medical Research Council.

Table 4 Domains of support need for people with COPD

Support domains	Met needs: support needs that were met	Unmet needs: shortfalls in provision where patient needs were not met	Helpful input: supportive input perceived as helpful
Physical
Understanding COPD	Feeling you have an understanding of COPD^Citation17 Understanding the impact of COPD on lungs^Citation15 Understanding the severity of symptoms and prognosis associated with a diagnosis of COPD^Citation26	Inadequate understanding and provision of information about the nature of COPD^Citation16,Citation18,Citation21–Citation24 Not understanding, or being familiar with, the terms such as COPD and emphysema^Citation16,Citation22 Patient not being fully aware they have a diagnosis of COPD^Citation19 Lack of discussion about the nature of COPD^Citation19,Citation20,Citation25 Needing a greater understanding about what is happening to the lungs in the context of COPD^Citation25 Needing greater clarity about COPD at the time of diagnosis^Citation16,Citation18,Citation19,Citation27 Not receiving enough information about prognosis and disease progression^Citation18,Citation19,Citation21,Citation25,Citation26,Citation28,Citation31,Citation32 Lack of opportunity to have an in-depth discussion about prognosis with preferred health care professional^Citation25,Citation29–Citation31	Respiratory nurses providing information about the nature of illness^Citation14 Information sessions within pulmonary rehabilitation classes^Citation17 Literature on COPD^Citation18 Discussions with health care professionals about prognosis and end of life care (or confidence that HCPs will bring up these issues as appropriate)^Citation30,Citation33 Conscious discussions with health care professionals of diagnosis^Citation29
Managing symptoms and medications	Developing an awareness of effectiveness of disease management strategies^Citation17,Citation35 Knowing about the effective use of medication^Citation14,Citation20	Inadequate information about management of illness^Citation16 Inadequate information about how to control breathlessness or panic attacks^Citation24,Citation26 Lack of information about medication and side effects^Citation20,Citation26 More information/support re using inhalers and medication^Citation20,Citation22,Citation24 Lack of advice re managing exacerbations^Citation20 Better awareness of treatment options and costs and benefits of medication^Citation20,Citation25 Need for medication to be reviewed^Citation25 Lack of proactive monitoring^Citation30,Citation32 Uncertainty about the provision of medical support after discharge^Citation34 More support to use standby medication effectively^Citation34 Lack of knowledge about provision and use of oxygen and nebulizers^Citation34 Help knowing what to do, or when to seek help, when symptoms deteriorate^Citation20,Citation21,Citation24,Citation32,Citation34 Uncertainty about who to contact during the night^Citation34 Someone to help make decisions about what to take or do when unwell^Citation36	Respiratory nurses providing information about breathing techniques and effective use of medication^Citation14 Pulmonary rehabilitation provided support in terms of learning to cope with symptoms/using inhalers/breathing exercises^Citation15,Citation17,Citation22 Booklets providing information about breathing exercises^Citation24 Specialist nurses being available over the weekends^Citation14 Support from GP to manage exacerbations^Citation32,Citation35 Proactive monitoring after admission^Citation32 Easy access to GPs who can respond to calls for assistance^Citation14 Discussions with health care professionals about treatment options^Citation29 Guidance and feedback from health care professionals about self-management^Citation17,Citation35 Monitoring from GP after hospital admission^Citation34 Having a named HCP or family who will respond to immediate concerns^Citation14,Citation15,Citation32,Citation37
Healthy lifestyle	Able to discuss or address smoking behaviors^Citation39	Suggestions on how to change lifestyle^Citation20 Support to exercise/use own exercise equipment safely at home^Citation24 Strategies to facilitate smoking cessation/access to smoking cessation programs^Citation38 Opportunities to discuss lifestyle choices in a nonjudgmental context^Citation20	Provision of a safe environment in which to exercise provided via Pulmonary Rehabilitation classes^Citation17,Citation22 Support and encouragement to exercise/stay active offered by physiotherapists at pulmonary rehabilitation classes^Citation17,Citation22 Encouragement from HCP to stop smoking^Citation38 Provision of a nonjudgmental context^Citation38 Access to smoking cessation/pulmonary rehabilitation and structured home exercise program^Citation38 HCP providing praise and support during smoking cessation^Citation39
Psychological and emotional
Managing feelings and worries	Ability to overcome feelings of low self-worth, sadness, and lack of confidence^Citation40 Able to express distressing emotions^Citation15,Citation27,Citation40	Dealing with feelings of frustration and anxiety^Citation22 Supporting patient psychologically and preventing pessimism^Citation20	HCPs providing opportunities to share feelings, be listened to, and feel understood^Citation14,Citation15,Citation40 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 context^Citation27,Citation35,Citation40 Seeing others with COPD coping^Citation15 Opportunities for mutual support provided by contact with peers^Citation15
Living positively with COPD	Overcoming feelings that you are alone in having COPD^Citation27 Experiencing a sense of validation of feelings and experiences^Citation27 Overcoming guilt and letting go of self-criticism^Citation27	Feeling that you are the only person with COPD^Citation35	Peer support provides opportunities for sharing and validating experiences with understanding others^Citation27,Citation35 Support and encouragement to live positively with COPD^Citation15,Citation17,Citation22,Citation35
Thinking about the future	Able to discuss and plan for the future: treatment, services, funeral arrangements, and financial and legal issues^Citation19,Citation21,Citation26,Citation31,Citation33	Opportunity to address emotions in relation to the future^Citation31,Citation40 Information about the availability of community supports and accommodation for people in the advanced stage of illness^Citation21 Opportunities to discuss and plan for the future treatment and care^Citation19,Citation31,Citation33	Positive impact of meeting others facing end of life^Citation31,Citation40
Anxiety and depression			Access to psychological support and specialist services (talking therapies)^Citation15,Citation22
Social
Practical support	Able to live at home and maintain some independence^Citation36	Someone to be the patients’ voice when energy is insufficient^Citation36	Provision of personal care by family: medication, dressing, and food and drink preparation^Citation30,Citation32,Citation37,Citation42,Citation44 Provision of practical help by family and friends: lifting oxygen tanks, gardening, lifts, housework, and shopping^Citation36,Citation37,Citation42–Citation44 Support with personal care provided by professional carers^Citation36,Citation44
Finance, work, and housing	Financial support facilitates ability to live in a better way^Citation22,Citation27 Able to discuss and plan for the future: funeral arrangements and financial and legal issues^Citation21,Citation26	Lack of information and support to access financial benefits^Citation16,Citation22,Citation30,Citation34,Citation45 Lack of information about housing options^Citation21,Citation34	Support from respiratory nurses to apply for benefits^Citation16 Information provided at pulmonary rehabilitation sessions about accessing benefits^Citation22
Social and recreational life	Access to transport or assistive devices such as wheelchairs facilitates ability to participate in social activities^Citation36,Citation42	Lack of transportation to access social and recreational support^Citation37	Pulmonary rehabilitation and hospice facilities provide opportunities to meet people and make friends^Citation17,Citation22,Citation40 Opportunities to participate in activities via hospice day provision^Citation40 Family and friends provide lifts^Citation44
Navigating services		Difficulty accessing and obtaining services^Citation18 Lack of information about available services^Citation16,Citation34	Families and friends accompanying patients to appointment to assist with understanding, making appointments, anxiety, assimilating, and providing information^Citation37
Maintaining independence	Mobility and independence increased due to access to assistive devices, eg, wheelchairs^Citation36 Patients have access to chairlifts, bath aids, and other assistive devices^Citation16,Citation43,Citation45	Lack of equipment to promote mobility, eg, wheelchairs/stairlifts^Citation16,Citation32,Citation36,Citation42,Citation45 More information about, and better access to, aids and adaptions^Citation16,Citation30,Citation32,Citation45	Social services provision of chairlifts^Citation16
Families and close relationships		Access to information about COPD for carers^Citation22 Access to support for carers^Citation30

Abbreviations: COPD, chronic obstructive pulmonary disease; GP, general practitioner; HCP, health care professional.

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