“I had to change so much in my life to live with my new limitations”: Multimorbid patients’ descriptions of their most bothersome chronic conditions

Abstract

Objective To characterize diseases that are described as most bothersome by individuals with multiple chronic conditions and to identify themes that characterize their experiences with their most bothersome condition. Methods In a survey of patients at an academic center and a Veterans Affairs hospital, we asked individuals with multiple chronic conditions to identify their most bothersome chronic condition and describe why it is challenging. Standard content analysis methods were used to code responses and identify themes reflecting characteristics of most bothersome conditions. Results The most commonly cited bothersome conditions were chronic pain (52%), diabetes (43%), post-traumatic stress disorder (25%), heart failure (24%), and lung problems (20%). Conditions were described as most bothersome due to: (a) impact on function and quality of life (e.g. active symptoms, activity limitations), (b) health consequences or sequelae (e.g. risk of complications), and (c) challenges associated with treatment or self-management. Patterns of theme dominance varied for conditions with different characteristics. Discussion The conditions that patients with multiple chronic conditions identify as most bothersome vary depending on individuals' diseases and their health-related preferences and priorities. Ascertaining patients' most bothersome conditions and associated challenges, stress, and frustrations may help ensure that management decisions are aligned with patient preferences and priorities.

Coping mediates the relationship between sense of coherence and mental quality of life in patients with chronic illness: a cross-sectional study

“…Patients with chronic illness have narrated that physical limitations, symptoms, chronicity, and the progressive nature of the illness as well as the impact of conditions on daily activities and relationships have a negative effect on their QoL [ 16 – 18 ]. They attempted to handle shortcomings to preserve an independence and normality in their life, activated personal resources, and looked for new sources of well-being [ 17 ].…”

Lyme Disease: Giving Voice to the Illness Experience-An Exploratory Descriptive Study

“…2.1.2 Likert Scale statements. The Likert Scale statement item section, called The Illness Experience Survey, was based on: 1) the aim of this study,2) current literature available on individuals suffering with Lyme disease and/or chronic illness (Ali et al, 2014;Ferguson, 2012;Horowitz, 2017;Jason & Reed, 2015;Johnson et al, 2011;Morris & Sanders, 2018;Nicolai et al, 2018;Ortenblad, Meillier, & Jonsson, 2018;Rebmanet al, 2017;Siegal, Brown, Devendoff, Collier, & Jason, 2018;Slightam, Brandt, Jenchura, Lewis, Asch, & Zulman, 2018;van den Wijngaard, 2015), 3) current literature on grief in general as related to chronic illness (Boss & Couden, 2002;Gill & Lowes, 2014), 4), literature on disenfranchised grief (Attig, 2004;Doka, 2002;Gill & Lowes, 2014;Sobel & Cowan, 2003), and 5) information gleaned through this author's experiences in speaking to many people suffering with chronic Lyme disease over the course of several years. The list of Likert Scale statement items listed on The Illness Experience Survey is outlined in Table 2.…”

“Standing on Common Ground” - A Qualitative Study of Self-management Support for Patients With Multimorbidity in Primary Health Care

“…Both professionals and patients experience patients' engagement in self-management as a balance between the triangle of patients' resources, patients' motivation, and shared responsibility between professionals and patients (18). To succeed, self-management support should be aligned with patients' abilities, strengths, and value systems, and respond to changes in their clinical conditions (16,17,19,20).…”