Elucidating emotional closeness within the Theory of Health-Related Family Quality of Life: evidence from breast cancer survivors.
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ABSTRACT: Objectives
Due to the increasing survivorship of breast cancer, survivor's view of their families through the process of diagnosis and treatment is essential. The Theory of Health-related Family Quality of Life (HRFQoL) guided this exploration of the ways in which breast cancer impacts family life. In this study, HRFQoL was used to explore breast cancer survivors' perceptions of the theory's sub-concepts of psychological and/or affectional closeness, family communication, and social support. The guiding research question was: In what ways do breast cancer survivors describe their experiences regarding changes in emotional closeness among family members following their breast cancer diagnosis? Participants (N?=?22) were interviewed to discuss their experiences with breast cancer, family quality of life, decision-making, basic health information, and personal coping. Data were analyzed using NVivo 9 to conduct thematic analysis and consensual qualitative data analysis.Results
Diagnosis and treatment of breast cancer improved the majority of participants' HRFQoL. Participants who reported positive perceptions prior to diagnosis also reported positive perceptions after diagnosis. These findings elucidate the HRFQoL theory and contribute to understanding how breast cancer impacts family life.
SUBMITTER: Elise Radina M
PROVIDER: S-EPMC6545688 | biostudies-literature | 2019 Jun
REPOSITORIES: biostudies-literature
Publications
Elucidating emotional closeness within the Theory of Health-Related Family Quality of Life: evidence from breast cancer survivors.
Elise Radina M M Deer Briana L BL Herriman Rachael A RA Jagpal Anjana A Dodd Mallory M MM Kawamura Kaylie L KL Clark Lindsay C LC
BMC research notes 20190603 1
<h4>Objectives</h4>Due to the increasing survivorship of breast cancer, survivor's view of their families through the process of diagnosis and treatment is essential. The Theory of Health-related Family Quality of Life (HRFQoL) guided this exploration of the ways in which breast cancer impacts family life. In this study, HRFQoL was used to explore breast cancer survivors' perceptions of the theory's sub-concepts of psychological and/or affectional closeness, family communication, and social supp ...[more]
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Project description:ObjectivesThe purpose of this research is to understand the thought processes that underpin responses to stated preference approaches for eliciting quality of life, in particular the standard gamble.MethodsWe utilize standard gamble preference elicitation survey techniques to elicit quality-adjusted life year weights for two reduced health states: chronic severe depression and total blindness. After the survey, we conduct open-ended qualitative interviews with respondents to determine their thought processes while taking the surveys and to shed light on what their quality-adjusted life year weight is capturing. Survey responses were coded and analyzed for themes in NVivo, the results of which were then formalized in the terminology of decision sciences.ResultsThe qualitative results of the cognitive interviews present systematic evidence for a type of cognitive bias present in standard gamble quality-adjusted life year weight elicitation, which has not been previously highlighted and which we call treatment bias. We define this treatment bias as the consideration of salient treatment alternatives correlated with a reduced health state, when these alternatives are not explicitly posed in the question. Our formalization of this cognitive behavior demonstrates that treatment bias will always bias the elicited health state utility of treating the illness in question downward.ConclusionThe treatment bias highlighted in this study has implications for economic evaluation when comparing treatment for illnesses where alternative treatments are widely publicized versus those that are not. For example, comparing the effectiveness of treating depression versus arthritis may be biased against depression if advertisements for anti-depressants are more widely viewed by survey respondents than advertisements for arthritis treatments. We propose a statement to be imbedded in all questionnaires regarding stated preference elicitation of quality-adjusted life year weights in order to correct for this bias in future stated preference surveys.
| S-EPMC6563399 | biostudies-literature
Project description:BackgroundSurvival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors' health-related quality of life (HRQoL).ObjectiveThe project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country.MethodsA total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ≤18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ≥5 years after cancer diagnosis; were aged ≥18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort.ResultsWe identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants.ConclusionsPanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL.International registered report identifier (irrid)RR1-10.2196/21851.
| S-EPMC7870350 | biostudies-literature
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| S-EPMC11320675 | biostudies-literature
Project description:BackgroundIn the late 1950s and early 1960s the drug Thalidomide was marketed across the world as a non-addictive tranquilizer. Despite being given to pregnant women as a safe treatment for morning sickness, Thalidomide caused serious damage to the unborn child. Much has been written about the drug and the birth defects it caused but evidence about the health of Thalidomide survivors as they age is limited.AimThe aim of this study was to: explore the health and wellbeing UK Thalidomide survivors; document the health problems experienced by them as they reach their mid-50s; and examine the impacts on their health-related quality of life and employment.MethodsA health and wellbeing survey of 351 UK Thalidomide survivors, which gathered information about home and employment circumstances, recent health problems, and health related quality of life (using SF12 Health Survey). Overall analysis focused on descriptive statistics; the association between respondents' health related quality of life and original impairment was examined using Pearson Correlation; and a three step Hierarchical Regression was used to explore the influence of five factors which narrative responses suggested might be important.ResultsAs Thalidomide survivors reach their mid-50's they are experiencing a wide range of secondary health problems, in particular musculoskeletal problems, and depression and anxiety, with multimorbidity a growing issue. These health problems are having a negative impact on their employment (two fifths are unable to work) and their physical health related quality of life, which is significantly poorer than the general population.DiscussionHaving lived relatively independent lives, many Thalidomide survivors are now having to adjust to growing disability. The study provides further evidence of the accumulative impact of disability over peoples' lifetimes and highlights the value of a life course perspective in understanding the complex experience of growing older with a disability.
| S-EPMC6334953 | biostudies-literature
Project description:IntroductionThis study examines how changes in emotional closeness and exchanges of support among family members after Hurricane Sandy affected residents' psychological outcomes both positively and negatively.MethodsThe working sample included 130 family ties reported by 85 respondents recruited from community and shelter residents on Staten Island after it was seriously damaged by the 2012 Hurricane Sandy. Regression with robust standard errors was used to examine how changes in emotional closeness and exchanges of support with adult family members affected respondents' posttraumatic psychological distress and posttraumatic growth.ResultsResults showed psychological distress was significantly increased with higher levels of instrumental support received from family members; whereas posttraumatic growth was significantly increased with greater improved emotional closeness with family members. In addition, having higher levels of education was associated with lower levels of psychological distress and respondents from shelters showed higher levels of posttraumatic growth than those who were from the community.DiscussionIt is suggested that after a significant disaster, although a family may be the best to take care of its members' emotional needs, it should not be expected to satisfy the instrumental needs of its members. In addition, posttraumatic psychological distress and growth are not necessarily opposite to each other; the psychological well- being of residents after a disaster needs to be carefully examined from both perspectives.
| S-EPMC5016198 | biostudies-literature
Project description:BackgroundBurden of stroke is rising due to the demographic and epidemiological transitions in Sri Lanka. Assessment of success of stroke-management requires tools to assess the quality of life (QOL) of stroke survivors. Most of currently used QOL tools are developed in high-income countries and may not reflect characteristics relevant to resource-constrained countries. The aim was to develop and validate a new QOL tool for stroke survivors in Sri Lanka.MethodsThe COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist was referred. A conceptual framework was prepared. Item generation was done reviewing the existing QOL tools, inputs from experts and from stroke survivors. Non-statistical item reduction was done for the 36 generated items with modified-Delphi technique. Retained 21 items were included in the draft tool. A cross sectional study was done with 180 stroke survivors. Exploratory Factor Analysis was done and identified factors were subjected to varimax rotation. Further construct validity was tested with 6 a-priori hypothesis using already validated tools (SF-36, EQ-5D-3 L) and a formed construct. Internal consistency reliability was assessed with Cronbach alpha.ResultsFour factors identified with principal-component-analysis explained 72.02% of the total variance. All 21 items loaded with a level > 0.4. The developed tool was named as the Post-stroke QOL Index (PQOLI). Four domains were named as "physical and social function", "environment", "financial-independence" and "pain and emotional-wellbeing". Four domain scores of PQOLI correlated as expected with the SF-36, EQ-5D Index and EQ-5D-VAS scores. Higher domain scores were obtained for ambulatory-group than the hospitalized-group. Higher scores for financial-independence domain were obtained for the group without financial-instability. Five a-priori hypothesis were completely proven to be true. Cronbach-alpha level ranged from 0.682 to 0.906 for the four domains.ConclusionsThere is first evidence for sufficient construct validity of the PQOLI as a valid QOL tool for measuring the QOL of stroke survivors with satisfactory internal consistency reliability.
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Project description:ImportanceExercise intolerance is associated with increased risk for morbidity and mortality in childhood cancer survivors. However, an association between exercise intolerance and psychosocial outcomes has not been fully explored.ObjectiveTo examine the associations between exercise intolerance and emotional distress, attainment of social roles, and health-related quality of life in childhood cancer survivors.Design, setting, and participantsA cross-sectional study including 1041 adult survivors of childhood cancer and 286 community controls in the St Jude Lifetime Cohort was conducted at St Jude Children's Research Hospital. The study was performed from April 1, 2012, to March 15, 2020.ExposuresExercise intolerance was defined as relative peak oxygen uptake less than 85% of age- and sex-estimated levels from maximal cardiopulmonary exercise testing.Main outcomes and measuresEmotional distress was measured with the 18-item Brief Symptom Inventory-18, which includes overall Global Severity Index and depression, anxiety, and somatization subscales. Participants with T scores greater than or equal to 63 were classified as having elevated levels of distress. Social attainment was evaluated using patient-reported educational, employment, and marital status. Health-related quality of life was examined with the Medical Outcomes Survey Short Form-36. Participants with T scores less than or equal to 40 were classified as reporting poor health-related quality of life.ResultsOf the 1041 participants, 528 were women (50.7%). The prevalence of exercise intolerance among survivors (mean [SD] age, 35.5 [9.2] years) was higher than that among controls (age, 34.5 [10.0] years) (survivors: 634 [60.9%] vs controls: 75 [26.2%], P < .001). After adjusting for age at diagnosis and cardiopulmonary exercise testing, sex, race/ethnicity, smoking, physical activity, and exercise intolerance were associated with an increased risk for anxiety (prevalence rate ratio [PRR], 1.95; 95% CI, 1.20-3.16), somatization (PRR, 1.86; 95% CI, 1.23-2.80), and unemployment (PRR, 1.76; 95% CI, 1.23-2.52); an inverse association was noted with having a college degree (PRR, 0.67; 95% CI, 0.50-0.88). Exercise intolerance was associated with an increased the risk for scoring less than or equal to 40 on the physical component summary of the Medical Outcomes Survey Short Form-36 (PRR, 3.69; 95% CI, 2.34-5.84). These associations persisted when either cancer treatment exposures or chronic health conditions were added to the model.Conclusions and relevanceThe findings of this study suggest that exercise intolerance is independently associated with emotional distress, attainment of social roles, and health-related quality of life of long-term survivors of childhood cancer. The results also suggest that improving physiologic capacity may benefit general health and wellness, as well as emotional health, ability to participate in social roles, and health-related quality of life.
| S-EPMC7317652 | biostudies-literature
Project description:Purpose:Substantial research exists on the physical toxicities from radiation therapy (RT) for oropharyngeal cancers, but emotional quality of life is understudied. The purpose of this study is to map the effects and time course of radiation-related changes in mood and anxiety and to investigate the physical factors that drive these changes. Methods and materials:We prospectively collected University of Washington Quality of Life questionnaires and identified patients with oropharyngeal cancer who were treated with curative-intent RT between 2013 and 2016 and had completed questionnaires within 12 months after RT (n = 69). We analyzed swallow, saliva, taste, chewing, speech, pain, mood, and anxiety scores, using a scale from 0 to 100. We conducted a multivariate regression analysis to identify physical functioning predictors of worse emotional scores. Results:Physical functioning scores declined from before RT to 3 months after RT and then began improving but did not rebound to baseline levels within 12 months. Patient mood slightly declined, but anxiety improved immediately after RT, with both generally improving such that scores were higher at the 12-month follow-up than at initial consult. Analysis showed that longer duration of treatment is associated with a higher likelihood of worse mood scores at 12 months (odds ratio [OR], 1.446; P < .01). Worse swallow score is associated with a greater likelihood of worse mood score at 3 months (OR, 0.971; P < .01) and 12 months (OR, 0.975; P < .01). A worse taste score is associated with a greater likelihood of worse anxiety score at 3 months (OR, 0.979; P < .05) and 12 months (OR, 0.982; P < .05). Conclusions:Emotional changes are associated with certain treatment-associated toxicities. A patient's emotional health is complex and likely multifactorial in nature. Our study identified key associations and time points to potentially intervene upon.
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Project description:OBJECTIVES:Mortality from pediatric sepsis has steadily declined over the past several decades; however, little is known about morbidity among survivors. We aimed to determine the prevalence of and risk factors for failure to recover to baseline health-related quality of life following community-acquired pediatric sepsis. DESIGN:Retrospective cohort study. SETTING:Seattle Children's Hospital. PATIENTS:Children aged 1 month to 21 years admitted to the inpatient wards or ICUs from 2012 to 2015 who met 2005 consensus sepsis criteria within 4 hours of hospitalization and were enrolled in the hospital's Outcomes Assessment Program with baseline, admission, and post-discharge health-related quality of life data available. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:We assessed health-related quality of life with the Pediatric Quality of Life Inventory for pre-admission baseline, admission, and post-discharge (median, 31 d) status. We determined associations between patient and illness characteristics with failure to recover within 4.5 points of baseline at follow-up (the minimum clinically significant difference between two scores). Of 790 patients, 23.8% failed to recover to baseline health-related quality of life at follow-up. Factors associated with failure to recover were septic shock, older age, private insurance, complex chronic disease, immune compromise, CNS infection or bacteremia, ICU admission, and longer length of stay. On multivariable analysis controlling for time to follow-up, failure to recover was independently associated with septic shock (relative risk, 1.79; 95% CI, 1.24-2.58), older age (relative risk, 1.02/yr; 95% CI, 1.01-1.05), immune compromise (relative risk, 1.83; 95% CI, 1.40-2.40), and length of stay (relative risk, 1.03/d; 95% CI, 1.01-1.04). CONCLUSIONS:Nearly one-quarter of children surviving hospitalization for community-acquired sepsis experienced a clinically significant deterioration in health-related quality of life. We identify risk factors for poor outcomes following sepsis and highlight the need for ongoing evaluation and treatment by primary and specialty care providers for pediatric sepsis survivors after hospital discharge.
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Project description:There is limited evidence on the association between adherence to guidelines for cancer survivors and health-related quality of life (HRQoL). In a cross-sectional study of Korean breast cancer survivors, we examined whether adherence to the guidelines of the American Cancer Society (ACS) and World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) for cancer survivors was related to levels of HRQoL, assessed by the Korean version of Core 30 (C30) and Breast cancer module 23 (BR23) of the European Organization for Research and Treatment of Cancer-Quality of Life Questionnaire (EORTC-QLQ). We included a total of 160 women aged 21 to 79 years who had been diagnosed with breast cancer according to American Joint Committee on Cancer (AJCC) stages I to III and had breast cancer surgery at least six months before the interview. Increasing adherence to ACS guidelines was associated with higher scores of social functioning (p for trend = 0.05), whereas increasing adherence to WCRF/AICR recommendations was associated with higher scores of arm symptoms (p for trend = 0.01). These associations were limited to those with stage II or III cancer. Diet may be an important factor in relation to quality of life among Korean breast cancer survivors, however our findings warrant further prospective studies to evaluate whether healthy diet improves survivors' quality of life.
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