Patients are reporting issues such as poor access to care, availability of socio-economic resources and time; knowledge; and emotional and physical energy. (Bee et al. 2014)
The work patients must do to care for their health; problem-focused strategies and tools to facilitate the work of self-care; and factors that exacerbate the burden felt (Eton et al 2014)
Capacity, responsibility, and motivation: a critical qualitative evaluation of patient and practitioner views about barriers to self-management in people with multimorbidity. BMC Health Services Research (Impact Factor: 1.77). 11/2014; 14::536. DOI: 10.1186/s12913-014-0536-y
Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Related Outcome Measures 2012:3 39–49 http://dx.doi.org/10.2147/PROM.S34681
The article by Eton et al (2012) provides an interesting conceptual framework for treatment burden. However, it is still too complex to operationalize. Additionally, if one is successful in operationalising the sub-themes and test it using SEM, there may be the problem of multicollinearity among the latent covariates (themes and sub-themes).
Have you considered the first tool within the Flinders Program - Chronic Condition Care Planning? You'll find details about it at: http://www.flinders.edu.au/medicine/sites/fhbhru/self-management.cfm
It's called the 'Partners in Health Scale' and it's a 12 item measure that the person self-rates re their knowledge, relationship with health professionals, access, monitoring and responding, physical, social and emotional impacts, lifestyle, etc. The tool has been validated and used in many research trials and in practice as either a standalone to measure change over time, determine client groupings, determine for services which clients would benefit from care planning, etc.
It has been adapted into other languages and used in the US, NZ, Australia, Hong Kong and some other countries.
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