Limits...
Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions.

Eton DT, Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm DH, Poplau S, Ramalho de Oliveira D, Odell L, Montori VM, May CR, Anderson RT - Patient Relat Outcome Meas (2015)

Bottom Line: The final framework features three overarching themes with associated subthemes.All themes and subthemes were subsequently confirmed in focus groups.The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

View Article: PubMed Central - PubMed

Affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA.

ABSTRACT

Purpose: The workload of health care and its impact on patient functioning and well-being is known as treatment burden. The purpose of this study was to finalize a conceptual framework of treatment burden that will be used to inform a new patient-reported measure of this construct.

Patients and methods: Semi-structured interviews were conducted with 50 chronically ill patients from a large academic medical center (n=32) and an urban safety-net hospital (n=18). We coded themes identifying treatment burden, with the themes harmonized through discussion between multiple coders. Four focus groups, each with five to eight participants with chronic illness, were subsequently held to confirm the thematic structure that emerged from the interviews.

Results: Most interviewed patients (98%) were coping with multiple chronic conditions. A preliminary conceptual framework using data from the first 32 interviews was evaluated and was modified using narrative data from 18 additional interviews with a racially and socioeconomically diverse sample of patients. The final framework features three overarching themes with associated subthemes. These themes included: 1) work patients must do to care for their health (eg, taking medications, keeping medical appointments, monitoring health); 2) challenges/stressors that exacerbate perceived burden (eg, financial, interpersonal, provider obstacles); and 3) impacts of burden (eg, role limitations, mental exhaustion). All themes and subthemes were subsequently confirmed in focus groups.

Conclusion: The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

No MeSH data available.


Related in: MedlinePlus

A final conceptual measurement framework of burden of treatment.
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f2-prom-6-117: A final conceptual measurement framework of burden of treatment.

Mentions: Upon completing the coding, the preliminary framework (Figure 1) and newly emergent issues from the HCMC patient interviews were reviewed. Modifications to the preliminary framework were made to accommodate new information learned in the second set of interviews and to further specify the construct of treatment burden. First, the “problem-focused strategies” were removed from the framework defining treatment burden, because these strategies describe voluntary activities that a person may choose to undertake to make self-care easier rather than non-voluntary self-care activities that patients are obligated to perform. These strategies are better construed as factors that may lessen perceived treatment burden. For more detail on these factors, see Ridgeway et al.20 Second, the subthemes describing “role and social activity limitations” and “physical and mental exhaustion of self-care” were rearranged into a new major theme entitled, “impacts of burden” as both appear to reflect outcomes of the demands of self-care. Third, the subtheme “systemic obstacles of health care delivery” – within the major theme “factors that exacerbate felt burden” – was further separated into two subthemes, one identifying obstacles associated with individual providers (eg, poor communication, lack of trust) and the other identifying obstacles associated with the health care system (eg, lack of care coordination, lack of care continuity, long wait times). The revised conceptual framework features three major themes: 1) “the work patients must do to care for their health”; 2) “challenges/stressors that exacerbate felt burden”; and 3) “impacts of burden”. These themes and the subthemes associated with them are shown in Figure 2.


Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions.

Eton DT, Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm DH, Poplau S, Ramalho de Oliveira D, Odell L, Montori VM, May CR, Anderson RT - Patient Relat Outcome Meas (2015)

A final conceptual measurement framework of burden of treatment.
© Copyright Policy
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4383147&req=5

f2-prom-6-117: A final conceptual measurement framework of burden of treatment.
Mentions: Upon completing the coding, the preliminary framework (Figure 1) and newly emergent issues from the HCMC patient interviews were reviewed. Modifications to the preliminary framework were made to accommodate new information learned in the second set of interviews and to further specify the construct of treatment burden. First, the “problem-focused strategies” were removed from the framework defining treatment burden, because these strategies describe voluntary activities that a person may choose to undertake to make self-care easier rather than non-voluntary self-care activities that patients are obligated to perform. These strategies are better construed as factors that may lessen perceived treatment burden. For more detail on these factors, see Ridgeway et al.20 Second, the subthemes describing “role and social activity limitations” and “physical and mental exhaustion of self-care” were rearranged into a new major theme entitled, “impacts of burden” as both appear to reflect outcomes of the demands of self-care. Third, the subtheme “systemic obstacles of health care delivery” – within the major theme “factors that exacerbate felt burden” – was further separated into two subthemes, one identifying obstacles associated with individual providers (eg, poor communication, lack of trust) and the other identifying obstacles associated with the health care system (eg, lack of care coordination, lack of care continuity, long wait times). The revised conceptual framework features three major themes: 1) “the work patients must do to care for their health”; 2) “challenges/stressors that exacerbate felt burden”; and 3) “impacts of burden”. These themes and the subthemes associated with them are shown in Figure 2.

Bottom Line: The final framework features three overarching themes with associated subthemes.All themes and subthemes were subsequently confirmed in focus groups.The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

View Article: PubMed Central - PubMed

Affiliation: Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA ; Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA.

ABSTRACT

Purpose: The workload of health care and its impact on patient functioning and well-being is known as treatment burden. The purpose of this study was to finalize a conceptual framework of treatment burden that will be used to inform a new patient-reported measure of this construct.

Patients and methods: Semi-structured interviews were conducted with 50 chronically ill patients from a large academic medical center (n=32) and an urban safety-net hospital (n=18). We coded themes identifying treatment burden, with the themes harmonized through discussion between multiple coders. Four focus groups, each with five to eight participants with chronic illness, were subsequently held to confirm the thematic structure that emerged from the interviews.

Results: Most interviewed patients (98%) were coping with multiple chronic conditions. A preliminary conceptual framework using data from the first 32 interviews was evaluated and was modified using narrative data from 18 additional interviews with a racially and socioeconomically diverse sample of patients. The final framework features three overarching themes with associated subthemes. These themes included: 1) work patients must do to care for their health (eg, taking medications, keeping medical appointments, monitoring health); 2) challenges/stressors that exacerbate perceived burden (eg, financial, interpersonal, provider obstacles); and 3) impacts of burden (eg, role limitations, mental exhaustion). All themes and subthemes were subsequently confirmed in focus groups.

Conclusion: The final conceptual framework can be used as a foundation for building a patient self-report measure to systematically study treatment burden for research and analytical purposes, as well as to promote meaningful clinic-based dialogue between patients and providers about the challenges inherent in maintaining complex self-management of health.

No MeSH data available.


Related in: MedlinePlus