Introduction
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality worldwide, with an economic and social burden that is both substantial and increasing(1). The prevalence of COPD increased by almost 40% between 1990 and 2017, and by 2017, COPD had become the third leading cause of death globally(2). In the European Union, the total costs of respiratory disease are estimated to be about 6% of the total annual healthcare budget, with COPD accounting for 56% (38.6 billion euros)(3). COPD prevalence, morbidity, and mortality vary across countries (4).
Based on demographic trends, the absolute number of patients with COPD is expected to increase by 31% between 2015 and 2040 in the Netherlands(5). COPD is associated with an increase in disability-adjusted life years and years of life lost across the life course, and with substantial social and economic consequences for both individual patients and health system(2). Total healthcare costs for patients with COPD were 400 million euros in 2007 in the Netherlands, and will rise to nearly 1.4 billion euros in 2032, being more than three times what it was in 2007 (including a growth in healthcare spending of 2.3% per year) (6).
Pulmonary rehabilitation (PR) aims to reduce the levels of morbidity, improve functioning, and is currently an integral component of managing COPD(7). PR is a cost-effective method for improving health-related quality of life in patients with COPD and is recommended in national guidelines(8). Despite PR being cost- effective, increasing demand from an aging population and rising supply costs demand sustainable and affordable care(9). In the medium term the cost of care is rising and a shortage of personnel is looming(10). Due to the high number of consultations per patient per year (24.7), the cost of PR in primary care is relatively high: nearly 40 million euros in 2007(6). To keep healthcare affordable and to make PR less labor-intensive, there is a need for more focus on self-management, without compromising the effectiveness of PR(11).
Attention to self-management in patients with chronic diseases is becoming increasingly important to provide effective and efficient care(12). Self-management programs in primary care may improve health behaviors, health outcomes, and quality of life and, in some cases, have demonstrated effectiveness for reducing health care utilization and the societal cost burden of chronic diseases(13). Self-management can be defined as ‘actions that individuals, families, and communities engage in to promote, maintain, or restore health and cope with illness and disability, with or without the support of health professionals, and including but not limited to self-prevention, self-diagnosis, self-medication, and coping with illness and disability’(14). This definition encompasses a range of self-management methods and approaches, one of the most important for self-management of chronic diseases being long-term adherence(15). Long-term adherence in self-management can be conceptualized by three components: 1. Initiation: When the patient starts a lifestyle behavior change in accordance with his healthcare provider; 2. Implementation: The extent to which a patient’s behavior corresponds with agreed recommendations from his healthcare provider; 3. Persistence: The time from initiation to discontinuation(16). Non-adherence can occur in any of these phases, and may change over time in patients. So, appropriate attention should be paid to patients’ level of adherence, as reduced adherence attenuates the benefits of the behavior change, and may negatively impact self-management and thus health outcomes(15).
As adherence is one of the critical determinants of self-management and COPD control, measures must be adopted to enhance adherence. Given general unawareness and lack of COPD control, improving adherence is crucial in the Dutch context. This review discusses the current evidence on exercise adherence in COPD and provides practical tips for assessing and adopting strategies to improve adherence in the Dutch context.
Defining adherence
Adherence has been defined as follows: “the extent to which a person’s behavior in therapeutic interventions, such as medication usage, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a healthcare provider”(17). Adherence is a complex, multi-dimensional construct encompassing patient-related, social/economic, therapy-related, condition-related and health system dimensions(15). It can be indirectly observed through a collection of related events, including attendance at clinic appointments, the extent to which patients follow their prescribed treatment, their communication with their healthcare provider regarding their recovery, and providing feedback about their home-based healthcare activities(18).
Factors affecting exercise adherence in COPD
Numerous factors influence adherence in patients with COPD. These factors encompass social/economic, health-care team/system, therapy-related, condition-related, and patient-related factors (Figure 1)(19). In Ricke et al.’s review (2023) high-quality evidence supported that higher exercise adherence was predicted by the patient-related prognostic factor Perceived Behavioral Control (PBC). Moderate-quality evidence supported that higher exercise adherence was predicted by higher self-efficacy, having an exercise history and being motivated. Additionally, higher exercise adherence was predicted by the social/economic prognostic factors such as higher education (moderate-quality evidence) and better physical health (low-quality evidence). Condition-related prognostic factors, including fewer comorbidities (moderate-quality evidence), fewer depressive symptoms (low-quality evidence) and less fatigue (low-quality evidence), also predicted higher exercise adherence. When predicting exercise adherence, the most prognostic factors were found in the patient-related, social/economic, and condition-related domains. Relatively little research has been conducted on the health-system factors and therapy-related factors of adherence. The common belief that patients are solely responsible for their treatment adherence is misleading and often reflects a misunderstanding of how other factors influence people’s behavior and capacity to adhere to their treatment(15). This holds true for the Dutch context as well.
Figure 1 Factors affecting exercise adherence
Note: * = significant predicting factor (p < 0.05); ** = only mentioned in qualitative research; PBC = Perceived Behavioral Control
Measuring adherence
Self-report diaries are the most commonly used measure of adherence. However, there is no standardized diary that can be used across research studies, making it difficult to compare results between studies. Additionally, poor completion rates for diaries, coupled with inaccurate recall and self-presentation bias, can further impact the validity of these data(20). A more objective approach involves the use of electronic devices such as accelerometers and pedometers(21). However, these devices require the patient to use them systematically, and therefore they might only be successful for more adherent patients. Furthermore, electronic devices might not be able to register all prescribed exercises(22).
The literature has shown that two measurement instruments appear to be valid and reliable for assessing exercise adherence: the Sport Injury Rehabilitation Adherence Scale (SIRAS)(23)and the Rehabilitation Adherence Measure for Athletic Training (RAdMAT)(24). The RAdMAT allows for a more detailed and comprehensive assessment of adherence, covering items related to patients’ attitudes, communication and clinic behaviors. A cross-cultural validation of this measurement instrument was conducted in the Netherlands(25, 26). The Dutch version, RAdMAT-NL, includes two subscales (Participation and Communication) and demonstrates good construct validity, making it suitable for quantifying exercise adherence in patients with COPD undergoing pulmonary rehabilitation in a primary physiotherapy practice.
To assess patient’s adherence over an extended period and not just at the moment, a prediction model known as the PATCH tool is available for patients with COPD(27). The predictors within the PATCH tool (intention, MRC-dyspnea score, depressive symptoms and alliance, which relates to the patient-therapist relationship) can aid physiotherapist in better estimating the likelihood that a patient will be capable of more self-management.
Strategies to improve exercise adherence
The World Health Organization (WHO) recognizes that improving patients’ adherence may be the best investment for effectively treating chronic conditions(15). Dutch research indicates that therapists can contribute to improving their patient's adherence in several ways. These include providing clear information about the purpose of advice and its potential benefits to the patient, collaboratively creating a treatment plan (shared-decision making) to ensure advice aligns within the patient's context, identifying and discussing barriers together with the patient (as patients often make cost-benefit analyses), and leveraging the environment to enhance social support. Another approach to help patients achieve lasting behavior change and, therefore, improve adherence, is to invest in the patient-therapist relationship. The patient-therapist relationship in therapeutic situations refers to the sense of collaboration, warmth, and support between the patient and therapist(28). An impaired patient-therapist relationship may arise from e.g., when patients feel unheard, disrespected, or otherwise out of partnership with their healthcare provider(29). Alliance has a direct impact on patient satisfaction, defined as “the degree to which the individual regards the healthcare service or product or the manner in which it is delivered by the provider as useful, effective, or beneficial”(30). Alliance consists of four elements – trust, knowledge, regard, and loyalty - and the nature of this alliance has a direct impact on patient satisfaction and, consequently, on exercise adherence(30). Patients who trust and “like” their healthcare provider experience higher levels of satisfaction. Patient satisfaction increases when healthcare providers have knowledge about patients’ concerns and address their expectations, as well as when healthcare providers encourage patients to share information. Healthcare providers’ friendliness, warmth, emotional support, and caring (regard) are all associated with patient satisfaction. Patients report higher satisfaction when healthcare providers offer continued support (loyalty); continuity of care enhances patient satisfaction(30).
Expert opinion
Considering the current evidence of the effectiveness of pulmonary rehabilitation and the influence of adherence on maximizing the potential of pulmonary rehabilitation, research should focus on improving adherence based on research. Future research could focus on patients who are non-adherent: can psychosocial interventions —based on the factors predicting adherence — in combination with the current biomedical interventions, increase adherence so that this patient group also achieves better health outcomes and ultimately gains the ability for increased self-management? Subsequently, it can be examined whether improved adherence and increased self-management lead to a sustainable, more active lifestyle in patients with COPD.
References
1. Lozano R, Naghavi M, Foreman K, Lim S, Shibuya K, Aboyans V, et al. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2095-128.
2. Stolz D, Mkorombindo T, Schumann DM, Agusti A, Ash SY, Bafadhel M, et al. Towards the elimination of chronic obstructive pulmonary disease: a Lancet Commission. The Lancet. 2022;400(10356):921-72.
3. FIRS. The global impact of respiratory disease. 2021.
4. GOLD. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. 2023.
5. Vzinfo.nl. COPD 2022 [cited 2022 November 22].
6. RIVM. Maatschappelijke kosten voor astma, COPD en respiratoire allergie. 2012. Contract No.: 260544001.
7. Spruit MA, Singh SJ, Garvey C, Zu-Wallack R, Nici L, Rochester CL, et al. An Official American Thoracic Society/European Respiratory Society Statement: Key Concepts and Advances in Pulmonary Rehabilitation. Am J Respir Crit Care Med. 2013;188(8):e13-e64.
8. Griffiths R, Jones A, Davies H, Mitra R. An observation of the predictors of patient adherence and performance in a multidisciplinary regional cardiac rehabilitation programme. Heart. 2020;106(SUPPL 2):A35-A6.
9. Winkelmann J, Williams GA, Rijken M, Polin K, Maier CB. Chronic conditions and multimorbidity: skill-mix innovations for enhanced quality and coordination of care. In: Maier CB, Kroezen M, Wismar M, Busse R, editors. Skill-mix Innovation, Effectiveness and Implementation: Improving Primary and Chronic Care. European Observatory on Health Systems and Policies. Cambridge: Cambridge University Press; 2022. p. 152-220.
10. Zeilstra A, den Ouden A, Vermeulen W. Middellangetermijn- verkenning zorg 2022-2025. CBP; 2019.
11. Holman H, Lorig K. Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Rep. 2004;119(3):239-43.
12. Bakker JH. Therapietrouw; van ervaren belang naar gedeeld belang. VWS; 2016.
13. Allegrante JP, Wells MT, Peterson JC. Interventions to support behavioral self-management of chronic diseases. Annu Rev Public Health [Internet]. 2019; 40:[127-46 pp.].
14. WHO. WHO Guideline on Self-Care Interventions for Health and Well-Being. Geneva: World Health Organization; 2021.
15. Sabaté E. Adherence to long-term therapies. Evidence for action Geneva: World Health Organization; 2003.
16. Wiecek E, Tonin FS, Torres-Robles A, Benrimoj SI, Fernandez-Llimos F, Garcia-Cardenas V. Temporal effectiveness of interventions to improve medication adherence: a network meta-analysis. PLoS One [Internet]. 2019; 14(3).
17. Meichenbaum D, Turk D. Facilitating treatment adherence. New York: Plenum; 1987.
18. Clark H, Bassett S, Siegert R. Validation of a comprehensive measure of clinic-based adherence for physiotherapy patients. Physiotherapy [Internet]. 2018; 104(1):[136-41 pp.].
19. Ricke E, Dijkstra A, Bakker EW. Prognostic factors of adherence to home-based exercise therapy in patients with chronic diseases: A systematic review and meta-analysis. Front Sports Act Living. 2023;5:1035023.
20. Stone AA, Shiffman S, Schwartz JE, Broderick JE, Hufford MR. Patient compliance with paper and electronic diaries. Control Clin Trials. 2003;24(2):182-99.
21. Yuen HK, Wang E, Holthaus K, Vogtle LK, Sword D, Breland HL, et al. Self-reported versus objectively assessed exercise adherence. Am J Occup Ther. 2013;67(4):484-9.
22. Yang CC, Hsu YL. A review of accelerometry-based wearable motion detectors for physical activity monitoring. Sensors (Basel). 2010;10(8):7772-88.
23. Brewer BW, van Raalte JL, Peptitpas AJ, Sklar JH, Pohlman MH, Krushell RJ, et al. Preliminary psychometric evaluation of a measure of adherence to clinic-based sport injury rehabilitation. Physical Therapy in Sport. 2000;1:68-74.
24. Granquist M, Gill D, Appaneal R. Development of a Measure of Rehabilitation Adherence for Athletic Training. Journal of Sport Rehabilitation. 2010;19(3):249-67.
25. Ricke E, Bakker E. Measuring Adherence in Clinic-Based Physiotherapy; A Study of the Inter-Rater Reliability of A Dutch Measurement. International Journal of Physiotherapy and Rehabilitation. 2019;5(1).
26. Ricke E, Lindeboom R, Dijkstra A, Bakker EW. Measuring Adherence to Pulmonary Rehabilitation: A Prospective Validation Study of the Dutch Version of the Rehabilitation Adherence Measure for Athletic Training (RAdMAT-NL). Patient Prefer Adherence. 2023;17:1977-87.
27. Ricke E, Bakker E. Development and validation of a multivariable exercise adherence prediction model for patients with COPD: a prospective cohort study. Int J Chron Obstruct Pulmon Dis. 2023;18:385-98.
28. Hall AM, Ferreira PH, Maher CG, Latimer J, Ferreira ML. The influence of the therapist-patient relationship on treatment outcome in physical rehabilitation: a systematic review. Physical Therapy [Internet]. 2010; 90(8):[1099-110 pp.].
29. Gordon C, Beresin EV. The doctor-patient relationship. In: Stern TA, Fava M, Wilens TE, et al., editors. Massachusetts General Hospital Comprehensive Clinical Psychiatry. 2nd ed. Philadelphia: Elsevier Health Sciences; 2016. p. 1-7.
30. Chipidza FE, Wallwork RS, Stern TA. Impact of the Doctor-Patient Relationship. Prim Care Companion CNS Disord [Internet]. 2015 PMC4732308]; 17(5).