A comparison of treatment preferences, decision making, and psychosocial outcomes in advanced cancer patients with and without minor children: A matched cohort study.

91 Background: Patients with advanced cancer who have minor children face unique challenges when coping with their life-limiting illness and the impact of their illness on their families. The goal of this study was to examine whether psychosocial functioning, treatment preferences, and treatment decisions in advanced cancer differ by parental status. Methods: A cohort of 60 parents with metastatic solid tumors age-matched with 60 non-parents (N = 120) participated in three structured interviews assessing treatment preferences and decisions over six months with complementary medical record review. Participants also completed validated measures of psychosocial functioning. Results: Seventy percent (n = 85) of the sample completed all study assessments. Mean age (45 years, SD 8), mean performance status score (ECOG = 1.2, SD 0.9), median duration of metastatic illness (19 months, range 1-115), gender ratio (66% female), and dropout rates were similar between groups. Parents and non-parents reported similar overall health-related quality of life, but parents were more likely to report poorer emotional well-being (p = 0.006) and more symptoms of depression (p = 0.04) and anxiety (p = 0.04) than non-parents. Parents and non-parents were equally likely to describe life-extension as their primary goal of anti-neoplastic treatment. Parents reported greater willingness to live in pain (48% “very willing” vs 27%, p = 0.007) and accept intubation/ventilation (40% vs 20%, p = 0.01) for life-extension. Compared to non-parents, parents were more likely to report their family members as the most influential factor in their decision-making (44% vs 12%) and less likely to cite their oncologist’s recommendation (25% vs 41%). There were no significant differences between groups for completion of a health care power of attorney or living will. Conclusions: Compared to similarly aged adults with metastatic cancer, parents experience greater psychological distress, are more willing to live in pain for life extension, and place greater importance on family-related factors in their cancer treatment decision-making.

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Parenting while living with advanced cancer: A qualitative study

Palliative Medicine ◽

10.1177/0269216316661686 ◽

2016 ◽

Vol 31 (3) ◽

pp. 231-238 ◽

Cited By ~ 27

Author(s):

Eliza M Park ◽

Devon K Check ◽

Mi-Kyung Song ◽

Katherine E Reeder-Hayes ◽

Laura C Hanson ◽

...

Keyword(s):

Decision Making ◽

Qualitative Study ◽

Functional Status ◽

Advanced Cancer ◽

Metastatic Cancer ◽

Eastern Cooperative Oncology Group ◽

Comprehensive Cancer Center ◽

Cancer Center ◽

Parental Concerns ◽

The Impact

Background: Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. Aim: To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. Design: We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. Setting and participants: A total of 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale = 0–1) and 17 with low functional status (ECOG=2–4). Results: We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. Conclusion: Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

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The impact of a physician’s recommendation and gender on informed decision making: A randomized controlled study in a simulated decision situation

10.31234/osf.io/r5vg4 ◽

2020 ◽

Cited By ~ 1

Author(s):

Marie Eggeling ◽

Anna Meinhardt ◽

Ulrike Cress ◽

Joachim Kimmerle ◽

Martina Bientzle

Keyword(s):

Decision Making ◽

Cruciate Ligament ◽

Treatment Options ◽

General Information ◽

Treatment Preference ◽

Controlled Study ◽

Treatment Preferences ◽

Hypothetical Scenario ◽

And Gender ◽

The Impact

Objective: This study examined the influence of physicians’ recommendations and gender on the decision-making process in a preference-sensitive situation. Methods: N = 201 participants were put in a hypothetical scenario in which they suffered from a rupture of the anterior cruciate ligament (ACL). They received general information on two equally successful treatment options for this injury (surgery vs. physiotherapy) and answered questions regarding their treatment preference, certainty and satisfaction regarding their decision, and attitude toward the treatment options. Then participants watched a video that differed regarding physician’s recommendation (surgery vs. physiotherapy) and physician’s gender (female vs. male voice and picture). Afterward, they indicated again their treatment preference, certainty, satisfaction, and attitude, as well as the physician’s professional and social competence.Results: Participants changed their treatment preferences in the direction of the physician’s recommendation (P<.001). Decision certainty (P<.001) and satisfaction (P<.001) increased more strongly if the physician’s recommendation was congruent with the participant’s prior attitude than if the recommendation was contrary to the participant’s prior attitude. Finally, participants’ attitudes toward the recommended treatment became more positive (surgery recommendation: P<.001; physiotherapy recommendation: P<.001). We found no influence of the physician’s gender on participants’ decisions, attitudes, or competence assessments.Conclusion: This research indicates that physicians should be careful with recommendations when aiming for shared decisions, as they might influence patients even if the patients have been made aware that they should take their personal preferences into account. This could be particularly problematic if the recommendation is not in line with the patient’s preferences.

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Lessons Learned From an Early Hotspot During the COVID-19 Pandemic

The American Surgeon ◽

10.1177/0003134821994757 ◽

2021 ◽

pp. 000313482199475

Author(s):

Brett M. Chapman ◽

George M. Fuhrman

Keyword(s):

Decision Making ◽

Surgical Education ◽

Clinical Care ◽

Well Being ◽

Educational Environment ◽

Lessons Learned ◽

Residency Programs ◽

Surgical Residency ◽

The Impact

The Covid-19 pandemic has provided challenges for surgical residency programs demanding fluid decision making focused on providing care for our patients, maintaining an educational environment, and protecting the well-being of our residents. This brief report summarizes the impact of the impact on our residency programs clinical care and education. We have identified opportunities to improve our program using videoconferencing, managing recruitment, and maintaining a satisfactory caseload to ensure the highest possible quality of surgical education.

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Assessment of quality of life in transfusion dependent thalassemic children - need to address parents/care givers

International Journal of Contemporary Pediatrics ◽

10.18203/2349-3291.ijcp20205522 ◽

2020 ◽

Vol 8 (1) ◽

pp. 147

Author(s):

Veeraraja B. Sathenahalli ◽

G. R. Rajashekar Murthy ◽

Netra Gouda ◽

Sanjay K. Shivanna

Keyword(s):

Quality Of Life ◽

Psychosocial Functioning ◽

Clinical Manifestations ◽

Well Being ◽

School Functioning ◽

Psychosocial Burden ◽

Globin Chains ◽

Care Givers ◽

The Impact

Background: Thalassemia is an autosomal recessive congenital disease caused by the reduced or absent beta globin chain synthesis of hemoglobin tetramer. The degree of imbalance between alpha and non alpha globin chains determines the severity of clinical manifestations. The disabling nature of the disease and chronic therapy affects the normal life causing psychosocial burden. Overall patient’s life, such as education, free-time, physical activities, skills, capabilities, and family adjustment is affected. The effects of which often result in psychological, emotional and social compromise. Health-Related Quality of Life (HRQoL) measurement is a multidimensional concept that focuses on the impact of the disease and its treatment on the well being of an individual.Methods: A descriptive observational hospital based study was conducted over a period of 3 months. Transfusion dependency in thalassemic children aged between 5 years and 18 years was the inclusion criteria. Thalassemic children having debilitating illnesses unrelated to thalassemia were excluded. Quality of life was assessed using Pediatric Quality of Life Inventory (PedsQL™ 4.0)4. The tool assesses the quality of life in five domains: physical functioning (PF: 8 items), psychosocial functioning (sum of emotional, social and school functioning), emotional functioning (EF: 5 items), social functioning (SF: 5 items) and school functioning (SC: 5 items).Results: Total of 125 children were enrolled with a mean age of 9.4±4.6 years (age range 5-18 yrs). According to the PedsQL questionnaire, the quality of life was similarly assessed by both parents and children. The total mean QoL score of the parents was 72.36±11.47 and of the children was 77.63±14.17. Emotional, school and psycho-social function were significantly affected according to both child and parents without statistical significance.Conclusions: Thalassaemia patients and their parents require lifelong psychological support for prevention of mental health issues. By increasing the awareness and knowledge levels of the parents, we can help sick children in developing countries to get the best care locally and to thus improve HRQoL.

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Someone to live for: social well-being, parenthood status, and decision-making in oncology.

Journal of Clinical Oncology ◽

10.1200/jco.1995.13.5.1255 ◽

1995 ◽

Vol 13 (5) ◽

pp. 1255-1264 ◽

Cited By ~ 101

Author(s):

S B Yellen ◽

D F Cella

Keyword(s):

Cancer Therapy ◽

Marital Status ◽

Advanced Disease ◽

Well Being ◽

Treatment Preferences ◽

Aggressive Treatment ◽

Switch Point ◽

The Impact ◽

Treatment Acceptance ◽

At Home

PURPOSE Little is known about the influence of social factors on treatment preferences and desire for aggressive cancer therapy. The present study assessed subjective and objective social indicators in patient preferences for treatment. METHODS Cancer patients (N = 296) with diverse diagnoses and stages read sets of hypothetical vignettes describing patients with early-stage and advanced disease. In the first set, patients made decisions about treatment acceptance given varying levels of either increasing cure or extending survival. In the second set, the point at which patients shifted preferences from mild to severe treatment to improve likelihood of 1-year survival (switch point) was the dependent measure. We assessed the impact of quality-of-life (QL) domains measured by the Functional Assessment of Cancer Therapy-General (FACT-G), having children, marital status, and living arrangements on treatment preferences and switch points. RESULTS The Social Well-Being (SWB) subscale of the FACT-G predicted both treatment acceptance (P = .007) and switch point (P = .043) in the advanced-disease vignettes, with lower SWB associated with less aggressive preferences. Children living at home was likewise associated with more aggressive intent both in treatment preferences (P = .003, advanced-disease vignette) and switch point (P < .001 and P = .001 for early- and advanced-disease vignettes, respectively). Living with others predicted more aggressive intent in the advanced-disease vignette (P = .03). Marital status did not predict either treatment acceptance or switch point. CONCLUSION Positive social well-being, as well as having children living at home, predicted patient willingness to accept aggressive treatment. Willingness to receive aggressive treatment may explain or mediate previously reported salutory effects of social support on cancer outcomes.

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How Gender Identity and Treatment Progress Impact Decision-Making, Psychotherapy and Aftercare Desires of Trans Persons

Journal of Clinical Medicine ◽

10.3390/jcm8050749 ◽

2019 ◽

Vol 8 (5) ◽

pp. 749

Author(s):

Toby K. Mayer ◽

Andreas Koehler ◽

Jana Eyssel ◽

Timo O. Nieder

Keyword(s):

Decision Making ◽

Gender Identity ◽

Online Community ◽

Online Survey ◽

Clinical Sample ◽

Treatment Preferences ◽

Individual Treatment ◽

Treatment Progress ◽

Treatment Experience ◽

The Impact

The gender identity of trans individuals influences their treatment preferences, and this in turn seems to affect their individual treatment progress. However, there has been no research which—next to the impact of gender identity on treatment desires—has also investigated the influence of treatment progress using a measure which assumes various possible transition pathways of trans persons.Therefore, an online community survey of trans people was conducted in Germany in 2015. Data were collected via an online survey from a non-clinical sample of n = 415 trans individuals (over half assigned female at birth), aged 16–76 (Mean (M) = 38.12). Almost one fifth of participants embraced non-binary or genderqueer (NBGQ) identities. Participants progressed 60.77% (standard deviation (SD) = 35.21) through treatment at point of data collection, as measured by the individual treatment progress score (ITPS). All participants, especially participants assigned male at birth, differed significantly in desire to participate in decision-making processes based on transition progress; individuals without treatment experience had less desire to decide treatment plans. NBGQ participants assigned male at birth in early stages of transition had significantly more desire for psychotherapy during transition than participants of the same identity in later transition stages. All participants, especially binary participants, significantly differed in desire for aftercare based on transition progress; individuals without treatment experience indicated more desire for aftercare. Results indicate health professionals should expect changing treatment desires in trans individuals at various stages of transition, particularly at treatment start, and based on gender identity.

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Impact of an outpatient interdisciplinary team (IDT) consultation on symptom clusters in advanced cancer patients seen at a supportive care outpatient clinic (OSC) in a tertiary cancer center

Journal of Clinical Oncology ◽

10.1200/jco.2009.27.15_suppl.e20542 ◽

2009 ◽

Vol 27 (15_suppl) ◽

pp. e20542-e20542

Author(s):

S. Yennurajalingam ◽

D. L. Urbauer ◽

R. Chacko ◽

D. Hui ◽

Y. A. Amin ◽

...

Keyword(s):

Cancer Patients ◽

Advanced Cancer ◽

Interdisciplinary Team ◽

Well Being ◽

Symptom Clusters ◽

Advanced Cancer Patients ◽

Edmonton Symptom Assessment Scale ◽

Cluster Composition ◽

The Impact

e20542 Background: Advanced cancer patients develop severe physical and psychosocial symptom clusters. There is limited data on the impact of an outpatient interdisciplinary team (IDT) consultation lead by palliative care specialists on symptom clusters. Cluster composition and consistence, response rate and predictors of response are unknown. Methods: 914 consecutive patients with advanced cancer presenting in the OSC from Jan 2003 to Oct 2008 with a complete Edmonton symptom assessment scale at the initial and follow-up visit (median 14 days, range 1–4 wks), and CAGE status (alcohol screening) were reviewed. Wilcoxon ranked sign test was used to determine whether symptoms changed over time. Principal components factor analysis with varimax rotation was used to determine clusters of symptoms at baseline and at follow-up. The number of factors calculated was determined based upon the number of eigen values that were greater than one. Results: Median age was 59 yrs, female were 46%. The most common primary cancer was Lung (19%). Baseline and follow-up visit scores (mean, SD) were: fatigue 5.7 (2.1) and 5.2 (2.2, p<0.0001), pain 4.9 (2.6) and 4.1 (2.6 p<0.0001), nausea 1.8 (2.4) and 1.7 (2.3, p=0.1), depression 2.6 (2.5) and 2.2(2.4,p<0.0001), anxiety 2.9 (2.7) and 2.4 (2.4, p<0.0001), drowsiness 3.2 (2.8) and 3.2 (2.6, p=0.7), dyspnea 2.6 (2.7) and 2.4 (2.6), p=0.0027), appetite 4.2(2.7) and 3.9 (2.7, p<0.0001), sleep 4.2 (2.6) and 3.8 (2.6, p<0.0001) and well being 4.3 (2.5) and 3.9 (2.3, p<0.0001). During the follow- up the symptom clusters varied from a 3 factor to a 2 factor model, reflecting the impact of the IDT on symptom burden. CAGE positive and CAGE negative patients had a significantly different symptom cluster model. Conclusions: Cluster composition differs when patients are assessed and managed by an IDT and among patients who screen positive for alcoholism. [Table: see text] No significant financial relationships to disclose.

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Decision-making on Public Transportation Services Based on the Socio-economic, Psychological, and Environmental Concern Factors

The Open Transportation Journal ◽

10.2174/1874447802014010022 ◽

2020 ◽

Vol 14 (1) ◽

pp. 22-31

Author(s):

Nattanin Ueasin

Keyword(s):

Decision Making ◽

Public Transportation ◽

Environmental Concern ◽

Service Selection ◽

Well Being ◽

Environmental Conservation ◽

Transport Systems ◽

Border Area ◽

Transportation Services ◽

The Impact

Aim: This research aims to study the socio-economic, psychological, and environmental factors which affect the decision making of passengers with regard to the use of public transportation route from Nong Khai province, which is considered as the border area of Thailand and Laos, to many destinations. Methods: The study was initially carried out by collecting data from 450 passengers using two public transportation services and 200 passengers using private cars. An analysis was conducted by means of descriptive statistics, factor analysis and binary logistic regression. Results: The results showed that the status, age, domicile, self-satisfaction and accomplishment, safety of life and property, and self-consciousness and environmental conservation practice influenced the choice of both the alternatives. Conclusion: To develop a service model, a variety of bus and van services must be provided to match the varied demand of passengers with different levels of purchasing power. It is also important to consider the impact of various factors that affect the public bus service selection, which may result in improved public transport systems. As a consequence, the well-being of border area citizens can be improved.

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What is the evidence for the impact of gardens and gardening on health and well-being: a scoping review and evidence-based logic model to guide healthcare strategy decision making on the use of gardening approaches as a social prescription

BMJ Open ◽

10.1136/bmjopen-2020-036923 ◽

2020 ◽

Vol 10 (7) ◽

pp. e036923 ◽

Cited By ~ 1

Author(s):

Michelle Howarth ◽

Alison Brettle ◽

Michael Hardman ◽

Michelle Maden

Keyword(s):

Decision Making ◽

Scoping Review ◽

Grey Literature ◽

Well Being ◽

Evidence Based ◽

Long Term Conditions ◽

Logic Models ◽

Health Strategy ◽

The Impact ◽

Health And Well Being

ObjectiveTo systematically identify and describe studies that have evaluated the impact of gardens and gardening on health and well-being. A secondary objective was to use this evidence to build evidence-based logic models to guide health strategy decision making about gardens and gardening as a non-medical, social prescription.DesignScoping review of the impact of gardens and gardening on health and well-being. Gardens include private spaces and those open to the public or part of hospitals, care homes, hospices or third sector organisations.Data sourcesA range of biomedical and health management journals was searched including Medline, CINAHL, Psychinfo, Web of Knowledge, ASSIA, Cochrane, Joanna Briggs, Greenfile, Environment Complete and a number of indicative websites were searched to locate context-specific data and grey literature. We searched from 1990 to November 2019.Eligibility criteriaWe included research studies (including systematic reviews) that assessed the effect, value or impact of any garden that met the gardening definition.Data extraction and synthesisThree reviewers jointly screened 50 records by titles and abstracts to ensure calibration. Each record title was screened independently by 2 out of 3 members of the project team and each abstract was screened by 1 member of a team of 3. Random checks on abstract and full-text screening were conducted by a fourth member of the team and any discrepancies were resolved through double-checking and discussion.ResultsFrom the 8896 papers located, a total of 77* studies was included. Over 35 validated health, well-being and functional biometric outcome measures were reported. Interventions ranged from viewing gardens, taking part in gardening or undertaking therapeutic activities. The findings demonstrated links between gardens and improved mental well-being, increased physical activity and a reduction in social isolation enabling the development of 2 logic models.ConclusionsGardens and gardening can improve the health and well-being for people with a range of health and social needs. The benefits of gardens and gardening could be used as a ‘social prescription’ globally, for people with long-term conditions (LTCs). Our logic models provide an evidence-based illustration that can guide health strategy decision making about the referral of people with LTCs to socially prescribed, non-medical interventions involving gardens and gardening.

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N30 Experience of living with intestinal failure: a systematic review of qualitative studies

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz203.1013 ◽

2020 ◽

Vol 14 (Supplement_1) ◽

pp. S671-S671

Author(s):

W Czuber-Dochan ◽

Q Liu ◽

D Roberts ◽

P Smith ◽

C Norton

Keyword(s):

Systematic Review ◽

Psychosocial Functioning ◽

English Language ◽

Intestinal Failure ◽

Venous Catheter ◽

Well Being ◽

Safety Net ◽

Central Line ◽

Age Range ◽

The Impact

Abstract Background Intestinal failure (IF) affects about 2000 people with Crohn’s disease (CD) in the UK. It is a result of the most severe phenotype of CD where an individual can no longer obtain sufficient nutrients from their gut to sustain life without supplementation in the form of parenteral nutrition (PN) or fluids intravenously and most have a stoma. Many cannot tolerate any food and very little drink by mouth. Such individuals usually need a permanent central venous catheter and must have an infusion of PN overnight, all or most nights in the week, often for 10–12 h at the time. Complications such as infection or thrombosis of the central line are a constant risk. This treatment must often continue for life. This systematic review aimed to explore the experience of people living with IF and the impact of the condition on their daily lives. Methods The following databases were searched in July 2019: MEDLINE, PubMed, PsychINFO, Web of Science and Global Health Scopus. Search terms included ‘intestinal failure’, ‘short bowel syndrome’, ‘quality of life’ (QoL) and terms relating to psychosocial functioning. English language articles were retrieved and screened by one reviewer at title and abstract, ratified by a second reviewer. The resulting articles selected at abstract were screened at full text by 3 reviewers. Results Eight papers, based on 7 studies, were included with a total of 97 participants: 36 male, 61 female. The age range of adults was 28–83. One study was conducted in children, with age range of 7–17. In 5 studies, all participants were on HPN. In 2 studies, 4/6 and 7/10 participants were on HPN respectively. There was one overarching theme: ‘Complications and challenges of living with IF’, with three specific themes that reflect the patients’ experience: (1) ‘Eating for survival’ encompasses the perpetual need to eat in order to make up for the large quantities of nutrients lost due to malabsorption (2) ‘Life with HPN: nutritional safety net at a price’ describes relief from the pressure to eat for survival but with drawbacks such as restrictions on social activities and risk of catheter line infections. (3) ‘Benefits and pitfalls of having a stoma’ relates to benefits of having a stoma, such as reduced frequency of toilet visits, and the accompanying inconvenience of leaks, high output and negative body image. Conclusion Living with IF has many challenges. Patients struggle with retaining enough nutrients and the physical and technical difficulties with having HPN and/or a stoma. The psychosocial well-being in these patients is affected by these challenges, as a result. Overall, QoL is poor and currently very little is being done to improve this.

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