Medullary Sponge Kidney: Patients’ Perspectives of Quality of Life and Occupation

PURPOSE: The purpose of this study was to explore engaged patients’ perspective of quality of life (QOL) and occupations of people living with medullary sponge kidney (MSK), a chronic condition. This study revealed how engaged patients with MSK defined QOL, symptoms that interfere with QOL, triggers of symptoms, and lack of occupational engagement due to living with MSK. Engaged patients’ perspectives on QOL can increase quality of care, lower health care cost, and improve QOL for individuals living with chronic conditions (Hibbard & Cunningham, 2008). Knowledge of QOL and occupation revealed how occupational therapists can meet the occupational needs of patients with chronic conditions such as MSK.

DESIGN: This is a qualitative study based on grounded theory. Participants included engaged patients with a self-reported diagnosis of MSK who were age 18 or older, U.S. residents, and English speakers. Following institutional review board approval, engaged patients were recruited from members of closed online MSK Facebook support communities who consented to take the survey.

METHOD: Participants obtained a link to an online survey of open-ended questions created on SurveyMonkey (San Mateo, CA) through closed online Facebook MSK support groups in which participants shared patient care experiences. Participants, who were engaged patients who lived with MSK, answered questions about their perceptions of QOL and occupational engagement. Data were collected from members of multiple MSK support groups to ensure rigor and trustworthiness of the data. Multiple researchers, including an experienced qualitative researcher, participated in data analysis to support triangulation. Researchers analyzed the data using grounded theory to produce themes until saturation was reached.

RESULTS: This was the first self-report large-scale study of individuals diagnosed with MSK. Of the participants, 99% were female, and 68% were age 25–44. Saturation was reached at 30–35 participants. Participants defined QOL as participation in desired occupations, consistent with the theory of occupational autonomy. Participants reported that MSK caused pain, fatigue, depression, and/or anxiety and that it interfered with participation in daily life, limiting their QOL. The main triggers of symptoms of MSK identified by participants included physical activity, fluids and food intake, and external and internal stressors. The main limitations in occupational engagement due to MSK diagnosis included working, parenting, participating in leisure activities requiring physical activity, and living without pain.

CONCLUSION: Standard measures of QOL are based on the clinically defined quality of life measures on the SF–36. The voices of individuals with chronic conditions such as MSK are commonly not heard, while symptoms of pain, discomfort, and escalated stress negatively affect physical health, mental health, and QOL. Participants need to be able to express their goals and desired occupations in their own voices. Our research shows that patients with MSK defined QOL in terms of occupational autonomy, meaning the ability to participate in desired occupations when one so desires. This study supports occupational therapy intervention to address engaged patients’ perceived needs for occupation and participation to support the quality of life of individuals with MSK, a chronic condition.

IMPACT STATEMENT: This research supports the American Occupational Therapy Association’s (2017) Vision 2025 and the American Occupational Therapy Foundation’s identified research priorities by providing support for the distinct value of occupational therapy to address QOL and participation, occupational performance, and health behaviors to prevent and manage chronic conditions such as MSK.

References

American Occupational Therapy Association. (2017). Vision 2025 . American Journal of Occupational Therapy, 71, 7103420010. https://doi.org/10.5014/ajot.2017.713002

Fabris, A., Anglani, F., Lupo, A., & Gambaro, G. (2013). Medullary sponge kidney: State of the art. Nephrology, Dialysis, Transplantation, 28, 1111–1119. https://doi.org/10.1093/ndt/gfs505

Gambaro, G., Feltrin, G. P., Lupo, A., Bonfante, L., D’Angelo, A., & Antello, A. (2006). Medullary sponge kidney (Lenarduzzi–Cacchi–Ricci disease): A Padua Medical School discovery in the 1930s. Kidney International, 69, 663–670. https://doi.org/10.1038/sj.ki.5000035

Hibbard, J. H., & Cunningham, P. J. (2008). How engaged are consumers in their health care, and why does it matter? Research Brief, 8, 1–9.

Hostetter, M., & Klein, S. (2012). Using patient-reported outcomes to improve health care quality. Quality Matters. Retrieved from www.commonwealthfund.org/publications/newsletters/quality-matters/2011/december-january-2012/in-focus

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