Barriers to Pulmonary Rehabilitation

Barriers to Pulmonary Rehabilitation
Dr Frances Early Cambridge University Hospitals NHS Foundation Trust

Dr Frances Early - Frances.Early@addenbrookes.nhs.uk
Overview Summary of findings from review papers Quantitative studies of predictors Summary Dr Frances Early -

Keating 2011 (n=11) De Sousa Pinto (n=8) Sohanpal 2015 (n=10) Mathar 2015 (n=6) Cox (n=48) Young et al 1999 * Camp et al 2000 Toms and Harrison 2002 Arnold et al 2006 Garrod et al 2006 O’Shea et al 2007 Rodgers et al 2007 Fischer et al 2007 Taylor et al 2007 Sabit et al 2008 Norweg et al 2008 Denn 2008 Fan et al 2008 Harris et al 2008 Fischer et al 2009 Gysels and Higginson 2009 Bulley et al 2009 Steele et al 2010 Williams et al 2010 Halding and Heggdal 2011 Keating et al 2011 (Chronic Res Dis) (J Physiother) Moore et al 2012 Sohanpal et al 2012 (Syst Rev) (Chronic Resp Dis) Thorpe et al 2014 Guo and Bruce 2014 Harrison et al 2015 Dr Frances Early -

Barriers to attending PR
Keating 2011: major themes preventing attendance Pinto 2013: primary themes relating to negative points of PR Mathar 2015: reasons for declinning Sohanpal 2015: understanding participation Barriers to attending PR Travel, transport and location y Parking Environmental concerns (complex journey, transport difficulties, location, weather) Inconvenient timing Disruption to established routine / other priorities Influence of patient’s doctor The referral process Lack of explanation of benefits Lack of perceived benefit Exercise would not improve health Family friends did not think it would be useful Perceived negative effects of exercise Exercise too vigorous, strenuous, detrimental to health Perception of health Too disabled to carry out activities Health needed to improve to attend Improvement in health no longer possible Condition or health not serious enough to warrant attendance Negative past experience of PR Previous negative experience with exercise Dr Frances Early -

Non-completion of PR and negative experiences
Keating 2011 major themes preventing attendance Pinto 2013: primary themes relating to negative points of PR Mathar 2015: reasons for declining Sohanpal 2015: understanding participation National COPD audit Non-completion Travel and transport y 2.1% Failure to see health improvements 16.8% Illness and comorbidities 23.6% Inability to keep up Too tired Acute exacerbation 13.2% Hospitalisation 5.7% Do not perceive self to be physically or psychologically affected by condition Psychosocial problems 3.6% Depression Uncomfortable training in a group Exercises at home 1.7% Other commitments 9.8% Lack of support Current smoking Negative PR experiences Short duration Fear of becoming more severely disabled (seeing more severely ill people in the group) Lack of encouragement during sessions Lack of comprehensive instructions of inhalers Lack of counselling services (to overcome psychological problems) Dr Frances Early -

Reasons for attending PR
Keating 2011 major themes preventing attendance Pinto 2013: primary themes relating to negative points of PR Mathar 2015: reasons for declining Sohanpal 2015: understanding participation Reasons for attending Doctor was enthusiastic, explained how they would benefit y Trusted advice Positive representation of programme Perceived it would help them gain control Wanting to help oneself and gain control and independence Perceived increased severity PR necessary in order to improve health and not concerned about conflicting obligations Positive past experience of PR Reason to get out of house Social and health benefits Dr Frances Early -

Review: Keating et al What prevents people with chronic obstructive pulmonary disease from attending pulmonary rehabilitation? (5 qualitative and 6 quantitative studies) Barriers to attending Major themes: Disruption to established routine, travel, transport and location, influence of patient’s doctor, lack of perceived benefit, inconvenient timing. Minor themes: negative experience of clinical tests or past research, lack of belief in competency of or past negative experiences with health care staff, information from friends/relatives who had negative experiences with PR, dissatisfaction with aspects of program organization, dislike for group activities, fear of regular exercise causing breathlessness or exacerbating existing medical conditions, lack of realization that PR programs run at different times during the year. Demographic variables: More likely to attend – married, home owners. Less likely – current smoker. Non-completion Major themes: Illness and comorbidities, travel and transport, depression, lack of support, lack of perceived benefit. Current smoking. Minor themes: weather, disruption to normal routines, attending a long (18-week) program; not being oxygen dependent; a greater number of hospital admissions in the previous 12 months; a lower maximum quadriceps torque; a lower quality of life; not completing high school, anxiety Demographic variables: No association with common physiological and clinical variables. Severity of lung disease was associated with completion in 2/5 studies, lower dyspnoea scores associated with completion in 1/5 studies, no relationship between completion and body mass index (BMI), oxygenation, or exercise capacity. Travel to the PR centre and a lack of perceived benefit influences both failure to attend and failure to complete Commonly used measures of disease severity such as lung function, dyspnoea and BMI were not consistently related to uptake or completion. Dr Frances Early -

Review: de Sousa Pinto et al COPD patients’ experience with pulmonary rehabilitation: A systematic review of qualitative research (8 studies) Themes relating to negative points of PR: Primary: transport problems, parking difficulties, lack of push and encouragement, lack of comprehensive instructions of inhalers and counselling services (to overcome psychological problems), short duration, end of formal support, fear of becoming more severely disabled (from seeing more severely ill people in the group) Secondary: lack of written information, individual counselling and information for family members; transport problems; delayed effect of training (discourage); after PR (lack of social support and social life; no success to self-manage) Dr Frances Early -

Synthesis: Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory (9 PR studies and 1 SM study) Keating et al 2011 mixed methods review: non-attendance and drop out were related to personal, clinical, social and physical barriers. This study views participation as a health behaviour. What are the factors that affect participation? Can behavioural theory help to explain participation? Dr Frances Early -

Synthesis: Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory (9 PR studies and 1 SM study) 3 descriptive themes for PR programmes Reasons for continuing and completing Reasons for not attending Reasons for dropping out Dr Frances Early -

Synthesis: Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory (9 PR studies and 1 SM study) Mapped themes onto two theoretical models: Adapted attitude – social influence – external barriers model: demographics, subjective symptoms, attitudes [personal and general benefits from participating], social influences, external or structural barriers Self regulation model: personal illness experience, medical and social communication, illness representations [disease identity], controllability, consequences, intervention representations [purpose and benefits, necessity-concerns] Revealed 4 key behavioural constructs that formed the analytical themes and explained the three descriptive themes: Attitude and social influences Illness representations and intervention representations Dr Frances Early -

Synthesis: Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory (9 PR studies and 1 SM study) Analytical themes Attitude Attenders: Wanting to help oneself and gain control, Reason to get out of house, Positive past experience of PR Continuing: Social and health benefits were reason to continue Non-attendance: Negative past experience of PR, Exercise would not improve health, Exercise too vigorous, strenuous, detrimental to health, Past experience with exercise Drop out: Failure to see health improvements, Inability to keep up, Too tired Social influences Non attendance: Lack of positive feedback, lack of explanation of benefits, family friends did not think it would be useful Attenders: doctor was enthusiastic, explained how they would benefit, trusted advice. Intervention representations: Attendance: Positive representation of programme, perceived it would help them gain control, benefits from past PR attendance, PR necessary in order to improve health and not concerned about conflicting obligations Non-attendance: perceived negative effects of exercise, previous negative experience with exercise, perceived environmental concerns (complex journey, transport difficulties, location, weather), class too early in the day Drop out: Expected to see improvement after a few sessions, too tired, unable to continue with exercise, cost of taxis or parking, timing, competing demands, not perceiving any benefit, intensive programme, uncomfortable training in a group. Illness representations: Attenders: perceived increased severity, wanting control and independence. Non-attenders: too disabled to carry out activities, health needed to improve to attend, improvement in health no longer possible, condition or health not serious enough to warrant attendance Drop out: acute exacerbation, depression, do not perceive self to be physically or psychologically affected by condition. Dr Frances Early -

Sohanpal et al 2015 Dr Frances Early -

Synthesis: Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory (9 PR studies and 1 SM study) Key messages A positive past experience with exercise influences attendance Referral from enthusiastic HCPs giving advice, suggestions and explanations. Avoid “intensive”, “there’s nothing we can do for you.” Keating has explained attendance in terms of value ascribed to PR relative to other important values, higher burden reported by non-attenders, non- completers may consider attending if other burdens could be addressed. This review argues attenders saw the programme as necessary because they were clear about the benefits and not concerned about the barriers, whereas non-attenders were not clear about the benefits and drop-outs did not experience benefit. Dr Frances Early -

Metasynthesis: Mathar Why Do Patients with COPD Decline Rehabilitation? (6 qualitative studies) Themes The referral process: the referring health professional's conviction and commitment and the patients' understanding of the referral Transport problems: e.g. long distance to the PR centre or the expenses of getting back and forth Perception of health: decliners feel too sick to join PR or do not identify themselves as a sick person, and do not want undertake the ‘patient role’. Other obligations or priorities: e.g. work, family obligations and vacations are prioritised. Dr Frances Early -

Systematic review: Cox et al Pulmonary rehabilitation referral and participation are commonly influenced by environment, knowledge, and beliefs about consequences: a systematic review using the Theoretical Domains Framework (48 studies quant and qual) The Theoretical Domains Framework (TDF) is an integrative framework that synthesises a number of behaviour change theories that can be used to help explain issues relating to implementation of best practice evidence in healthcare settings. Domains of the TDF most frequently representing barriers and facilitators to pulmonary rehabilitation participation were ‘Environment’, ‘Knowledge’ and ‘Beliefs about consequences’ Need intervention strategies that target these areas. Dr Frances Early -

Cox et al 2017 Dr Frances Early -

TDF domains Environment This domain relates to the circumstances of a person’s situation or environment that promote (or impede) the development of skills or behaviours, and may encompass factors including resources and materials, organisational culture, critical events and environmental stressors. Knowledge Knowledge in the TDF relates to the awareness of something, where such knowledge may be procedural or task specific. Beliefs about consequences Refers to a person’s acceptance of the outcome of a given situation and may relate to factors including their beliefs, outcome expectancies or anticipated regret. Social domain The interpersonal processes that influence an individual to change their behaviour or thinking and may come about through social pressure, norms, support or identifying with a group. Dr Frances Early -

Predictors Predictors of attendance were fat-free mass and perception of effectiveness of treatment (Fischer et al 2009) Functional performance and pulmonary functioning play only a modest role in predicting drop-out. (Fischer et al 2009) Predictors of non-attendance were female gender, current smoker, living alone (Fischer et al 2009, Hayton et al 2013), LTOT (Hayton et al 2013) Dr Frances Early -

Summary Range of studies (though patients who declined may be under-represented) Factors affecting attendance Organisation of classes Referral process Perceived benefit and effectiveness Perceived health Other priorities Past negative experience of PR or exercise Gender, smoking status, living alone Factors affecting non-completion Travel and transport Expectation of improvement Illness Psychosocial Other commitments Modest role of functional performance and pulmonary function Dr Frances Early -

References Baxter et al National COPD Audit Programme: Clinical audit of COPD in primary care in Wales National clinical audit report. London: RCP, 2016. Cox et al Pulmonary rehabilitation referral and participation are commonly influenced by environment, knowledge, and beliefs about consequences: a systematic review using the Theoretical Domains Framework. Journal of Physiotherapy –93 De Sousa Pinto et al Chronic obstructive pulmonary disease patients’ experience with pulmonary rehabilitation: A systematic review of qualitative research. Chronic Respiratory Disease 10(3) Fischer et al 2009 Drop-out and attendance in pulmonary rehabilitation: The role of clinical and psychosocial variables. Resp Med Hayton et al Barriers to pulmonary rehabilitation: Characteristics that predict patient attendance and adherence Respiratory Medicine Volume 107, Issue 3, Pages Keating et al What prevents people with chronic obstructive pulmonary disease from attending pulmonary rehabilitation? A systematic review. Chronic Respiratory Disease 8(2) 89–99 Mathar et al Why Do Patients with COPD Decline Rehabilitation? Scand J Caring Sci. 2016 Sep;30(3):432-4 Sohanpal et al Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory. Primary Care Respiratory Medicine Dr Frances Early -

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