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140511L - PSYCHOSOCIAL IMPACT OF CANCER AND ITS TREATMENT

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Lecture for medical students Faculty of Medicine King Fahad Medical City on May 11, 2014 by Professor Omar Hasan Kasule Sr.


IMPACT OF CANCER RELATED INFERTILITY[1]
  • Women whose fertility was affected by cancer treatment were likely to experience negative emotional reactions, which can strain their relationships.
  • Additional concerns included receiving inadequate information about infertility, enduring distress, and feeling uncertainty regarding fertility status.

LONG TERM IMPACT OF CHILDHOOD CANCER[2]
·         There are over 13 million cancer survivors in the United States, which constitutes 3-4% of the U.S. population.
·         According to the Surveillance Epidemiology and End Results program (SEER) data the 5-year overall survival rate for children diagnosed with cancer between ages 0-19 is 83.1%, and 2/3 of childhood cancer survivors will experience at least one late effect of treatment.
·         Cancer and cancer treatments have both direct and indirect effects of physiological, psychological, and interpersonal factors that can negatively impact the health and well-being of cancer survivors including sexual and reproductive function and satisfaction.
·         Cancer, its management, and the resulting late effects must be explored and understood by providers caring for childhood cancer survivors so that educational, psychological, pharmacologic, as well as preventive interventions can be implemented with this population.


PSYCHOSOCIAL IMPACT OF LIVING WITH LYMPHEDEMA[3]
·         Poorer overall health-related quality of life was reported among cancer survivors with lymphedema.
·         The consistent, detailed, and vivid descriptions from the qualitative studies suggest that cancer-related lymphedema exerts tremendous negative psychosocial impact, which quantitative studies failed to capture.
·         Nursing strategies include helping patients to build a routine for daily care, setting goals, exercise, positive self-talk, providing helpful resources, and organizing support groups.
·         Professional organizations should devote resources to public education through television advertisement, public meetings, and online education.


PSYCHOSOCIAL IMPACT OF TREATING CANCER IN CHILDREN[4]
·         Children may experience positive psychosocial outcomes on treatment completion, including high self-worth, good behavioral conduct, and improved mental health and social behavior.
·         Children may also experience significant negative outcomes, including lower levels of psychological well-being, mood, liveliness, self-esteem, and motor and physical functioning, as well as increased anxiety, problem behaviors, and sleeping difficulties.
·         Completing treatment can be a psychologically complex time for children as they wait to make the transition from “cancer patient” to long-term “cancer survivor.”


PSYCHOSOCIAL IMPACT ON VETERANS[5] [6]
·         This qualitative study aimed to identify Veterans' perceptions of how cancer affects their life following treatment, particularly in relation to treatment side effects and identity as a cancer survivor. A diverse sample of 35 Veteran cancer survivors participated in semistructured, individual interviews.
·         Thematic analysis revealed the enduring impact of diagnosis and chronic uncertainty regarding recurrence, psychological side effects that were periodic and typically self-managed, and physical side effects as common, but considered an acceptable trade-off for increased chances of survival. Perceptions of the term cancer survivor varied considerably among participants. Implications for survivorship wellness and care planning are discussed.
·         A HBHC program was carried out with 51 children (0-18 years) with cancer to assess its feasibility in terms of satisfaction, care preferences, safety, and cost.
·         A controlled trial was conducted to assess children's health-related quality of life (HRQOL) using the parent-reported and self-reported PedsQL generic core scale and PedsQL cancer module, and the psychosocial impact on the family by PedsQL family impact module comprising a subsample of 28 children and 43 parents in the home care group, and 47 children and 66 parents receiving standard hospital care.
·         All parents in the HBHC program were satisfied and preferred home care. There were no serious adverse events associated with HBHC, and costs did not increase. When adjusting for age, gender, diagnosis and time since diagnosis, we found significant higher HRQOL scores in parent-reported physical health (P = 0.04; 95% confidence interval (CI): -0.2-19.5) and worry (P = 0.04; 95% CI: -0.4-20.6) in the home-care group indicating better physical health and less worry for children in the home-care group. No significant difference was found in the Family Impact Module.
·         This study indicates that HBHC is a feasible alternative to hospital care for children with cancer, and is greatly preferred by parents. Specific aspects of children's HRQOL may be improved with HBHC and the psychosocial burden on the family does not increase.


IMPACT ON FAMILY LIFE[7]
·         When a parent is diagnosed with cancer it can have a profound impact on the family, especially the children.
·         Findings indicated that parents are often the gatekeeper to how, when and the context in which children learn about parental cancer.
·         Many parents expressed a lack of confidence and skills as they considered communicating with their children about cancer.
·         Parents stated the need for professional input mainly due to changes in their children's behaviour. Children had a number of fantasies and misconceptions surrounding cancer. This psychological intervention normalized their experience of parental cancer. It also improved children's understanding of cancer and equipped them with coping strategies.
·         Professionals perceived the intervention led to improved family communication and promoted discussion of emotions. Open communication is pivotal for children whose parents have cancer but parents need supported and resourced to promote family coping when diagnosed with cancer.


IMPACT ON ADULT PATIENTS[8]
·         A prospective, Cross-sectional study was performed on 200 patients visiting the oncology outpatient facility of AKUH from December 2010 to May 2011 through an interview. Responses were recorded on pre-designed questionnaires including FACT-G QOL (Functional Assessment of Cancer Therapy-General Quality Of Life) component.
·         In our study one third of cancer patients were found to be depressed mainly affecting those who were receiving multimodality treatment or facing financial issues. Religious help was the main coping strategy for them.


PSYCHOSOCIAL ADJUSTMENT[9]
·         Caregivers of 89 newly diagnosed children completed the child behavior checklist, the pediatric quality of life inventory (PedsQL(™) 4.0), the Parenting Stress Index, and the SF-36 questionnaire at diagnosis, and again 3 and 6 months into treatment. They were compared with a group of age- and sex-matched controls from general community.
·         Significantly worse HrQoL in both children and their caregivers and greater parenting stress were noted in the cancer group than the controls during the first 6 months. Children with cancer were found to have significantly more internalizing behavioral problems and somatic complaints, especially those younger than 12 years old. After starting chemotherapy, significant decrease in parenting stress and improvements of both caregivers and children's HrQoL were noted within the first 6 months, although not to the level comparable with normal controls.
·         Although children and their caregivers can adjust themselves gradually during the first 6 months after diagnosis of cancer, intervention and efforts aimed at reducing their distress and promoting adjustments are still required during this period.


COGNITIVE IMPAIRMENT DUE TOMCHEMOTHERAOY HAS PSYCHOSOCIAL IMPACT[10]
·         Introduction: Colorectal cancer is the third most commonly diagnosed cancer in Canada. Chemotherapy often is used as treatment for colorectal cancer, and studies have documented cognitive changes in patients after chemotherapy treatment. What remains unclear is the impact of such changes on a person's roles and relationships, herein referred to as psychosocial adjustment.
·         Aims: The purpose of this research was to explore group differences in psychosocial adjustment and chemotherapy-induced cognitive impairment in patients with colorectal cancer.
·         Methods: Participants were assessed cross-sectionally, at various time points along their treatment trajectory, using the Psychosocial Adjustment to Illness Scale-Self-Report (PAIS-SR) and the Cambridge Neuropsychological Test Automated Battery (CANTAB).
·         Results: A statistically nonsignificant negative association was indicated between PAIS-SR and CANTAB results, indicating that they would have no meaning in a clinical context. No differences between groups were observed in terms of cognitive ability; however, patients who completed chemotherapy appeared to be at a higher risk for psychosocial maladjustment.
·         Conclusion: This study suggests that cognitive changes do not influence patients' relationships and functional roles, as indicated from the PAIS-SR.


NEGATIVE AND POSITIVE IMPACTS OF CANCER DIAGNOSIS[11]
·         BACKGROUND: The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients.
·         METHODS: This was a population-based, multicenter study of 523 newly diagnosed AYA survivors (ages 15-39 years) of germ cell cancer (n = 204), non-Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15-20 years, 21-29 years, and 30-39 years).
·         RESULTS: Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence.
·         CONCLUSIONS: The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives.


THE PSYCHOSOCIAL IMPACT OF INTERRUPTED CHILDBEARING[12]
·         OBJECTIVE: To understand the influence of cancer-related infertility on women's long-term distress and quality of life. Women diagnosed at age 40 or less with invasive cervical cancer, breast cancer, Hodgkin disease, or non-Hodgkin lymphoma were interviewed an average of 10 years later. We predicted that women whose desire for a child at diagnosis remained unfulfilled would be significantly more distressed.
·         METHODS: Participants completed a semi-structured phone interview, including the SF-12®, Brief Symptom Inventory-18, Impact of Events Scale (IES), Reproductive Concerns Scale (RCS), brief measures of marital satisfaction or comfort with dating, sexual satisfaction, and menopause symptoms.
·         RESULTS: Of 455 women contacted by phone, 240 (53%) participated. Seventy-seven women had wanted a child at diagnosis but did not conceive subsequently (38 remaining childless and 39 with secondary infertility). Even controlling for other psychosocial and health factors, this group had higher distress about infertility (RCS) (p<0.001), had more intrusive thoughts about infertility, and used more avoidance strategies when reminded of infertility (IES) (p<0.001). Childless women were the most distressed. Women with adopted or stepchildren were intermediate, and those with at least one biological child were least distressed. Infertility-related distress did not differ significantly by cancer site.
·         CONCLUSIONS: Even at long-term follow-up, distress about interrupted childbearing persists, particularly in childless women. Social parenthood buffers distress somewhat, but not completely. Not only is it important to offer fertility preservation before cancer treatment, but interventions should be developed for survivors to alleviate unresolved grief about cancer-related infertility.


PSYCHOSOCIAL IMPACT OF THE STIGMA[13]
·         BACKGROUND: Lung and head and neck cancers are widely believed to produce psychologically destructive stigma because they are linked to avoidable risk-producing behaviors and are highly visible, but little research has tested these ideas. We examined cancer-related stigma, its determinants, and its psychosocial impact in lung (n = 107) and head and neck cancer survivors (n = 99) ≤ 3 years post-diagnosis. We investigated cancer site, self-blame, disfigurement, and sex as determinants, benefit finding as a moderator, and illness intrusiveness as a mediator of the relation between stigma and its psychosocial impact.
·         METHODS: Prospective participants received questionnaire packages 2 weeks before scheduled follow-up appointments. They self-administered widely used measures of subjective well-being, distress, stigma, self-blame, disfigurement, illness intrusiveness, and post-traumatic growth.
·         RESULTS: As hypothesized, stigma correlated significantly and uniquely with negative psychosocial impact, but contrary to common beliefs, reported stigma was comparatively low. Reported stigma was higher in (i) men than women, (ii) lung as compared with head and neck cancer, and (iii) people who were highly disfigured by cancer and/or its treatment. Benefit finding buffered stigma's deleterious effects, and illness intrusiveness was a partial mediator of its psychosocial impact.
·         CONCLUSIONS: Stigma exerts a powerful, deleterious psychosocial impact in lung and head and neck cancers, but is less common than believed. Patients should be encouraged to remain involved in valued activities and roles and to use benefit finding to limit its negative effects.


COMPONENTS OF PSYCHOSOCIAL IMPACT[14]
·         PURPOSE: Considerable research has demonstrated the negative psychosocial impact of cancer. Recent work has highlighted positive psychosocial outcomes. Research is now needed to evaluate the relationship between negative and positive impacts. This paper reports the development and validation of a measurement model capturing positive and negative psychosocial illness impacts.
·         METHODS: The sample included 754 cancer patients on- or post-treatment. Item development was informed by literature review, expert input patient interviews and the results of a pilot study of 205 cancer patients, resulting in 43 positive and 46 negative items. Factor analyses were used to evaluate the dimensionality of the item pools. Analysis of variance (ANOVA) was used to examine relationships between psychosocial illness impact and other variables.
·         RESULTS: Unidimensionality was demonstrated within but not across negative and positive impact items. ANOVA results showed differential relationships between negative and positive impacts, respectively, and patient sociodemographic and clinical variables.
·         CONCLUSION: Positive and negative psychosocial illness impacts are best conceptualized and measured as two independent factors. Computerized adaptive tests and short-form measures developed from this comprehensive psychosocial illness impact item bank may benefit future research and clinical applications.


QUALITY OF LIFE and PSYCHOSOCIAL FACTORS[15]
·         PURPOSE: Understanding the impact of childhood cancer on the family is increasingly important. This study aimed to (1) examine the relationship between child clinical characteristics and health-related quality of life (QOL) among parents of children with cancer or brain tumors, and (2) determine how parental psychosocial factors impact this relationship.
·         METHODS: Using a within-group approach, this study examined 75 children with cancer or brain tumors and their parent. In-person interviewer-assisted surveys assessed sociodemographics, psychosocial factors, and QOL. Child clinical characteristics were obtained through medical record abstraction. Regressions were performed to determine factors related to parental QOL.
·         RESULTS: Children's activity limitation and active treatment status were associated with worse parental mental QOL (5.4 and 4.4 points lower, respectively; P < 0.05). Adding parental psychosocial characteristics to the model eliminated the relationship between child clinical characteristics and parental mental QOL (P > 0.05 for all child characteristics).
·         CONCLUSIONS: While child clinical characteristics appear to be related to poor parental QOL, this relationship was mediated by caregiver burden and stress. Interventions to reduce burden and stress may mitigate the deleterious effects of caregiving. Systematic screening of parents' mental and physical health may facilitate interventions and improve the health and well-being of parents and children.


MANAGING PSYCHOSOCIAL CHANGE[16]
·         Using combined qualitative data from multiple case study interviews and an online survey, this study explored the impact of appearance change on 22 adolescents receiving cancer treatment aged 13 to 18 years and six of their parents.
·         Appearance changes were a major concern. Adolescents typically struggled to adapt to new experiences and concerns related to this highly sensitive issue. Many felt anxious and self-conscious and were reluctant to reveal appearance changes in public.
·         These feelings were compounded by the negative reactions of others (e.g., staring, teasing, and inappropriate questioning), which sometimes lead to avoidance of social activity and threats of noncompliance.
·         Parents of these children felt ill-prepared to manage appearance-related anxieties. Adolescents wanted support to develop the practical and social skills necessary to maintain a "normal" appearance and manage the negative responses of others. However, some adolescents showed resilience and, with support from friends and family, developed strategies to manage their altered appearance and its social consequences. These strategies are explored, which can inform
·         interventions to support adolescents and parents.


IMPACT ON CHILDREN[17]
·         The diagnosis and treatment of cancer are a stressful and threatening experience, which can be emotionally devastating to children. Despite the improved prognosis, the course of cancer treatment has tremendous impact on children.
·         This article aims to examine the impact of cancer on physical, emotional, and psychosocial well-being of Hong Kong Chinese children, an area of research that has been underrepresented in the literature.
·         Ninety-eight Hong Kong Chinese children aged 7 to 15 years, admitted for treatment of cancer in 2 pediatric oncology units of 2 different hospitals, were invited to participate in the study.
·         Findings from this study indicated that the children scored considerably high state anxiety on admission, and more than half of the participants presented some depressive symptoms during their stay in the hospital. Moreover, semistructured interviews indicated that nearly all children expressed different degrees of sadness and worry.
·         The findings suggested that there is a room for improvement in existing nursing intervention regarding preparing children for hospitalization and treatment of cancer. There is an imperative need for nurses to evaluate appropriate nursing interventions that can help children resume their normal growth and development, in particular, to help them ease the physical, emotional, and psychological burden of life-threatening disease.


IMPACT OF MEDIA ON PSYCHOSOCIAL  ADJUSTMENT[18]
·         OBJECTIVE: To examine the impact of an 8-week cancer multimedia informational intervention on health-related outcomes among individuals newly diagnosed with cancer.
·         METHODS: Using a pre-/post-quasi-experimental design, participants with breast or prostate cancer (n=250) were conveniently recruited from four oncology ambulatory clinics and completed questionnaires at three points (enrolment, 1-2 weeks post-intervention, and 3 months later).
·         RESULTS: Repeated-measure analyses showed that, when compared to controls, the intervention significantly improved satisfaction with cancer information over time for women (p<.001), prevented deterioration in functional quality of life (p=.030) and marginally improved perceived oncologist informational support (p=.051). There were no significant differences in psychosocial adjustment among men. Unlike previously suggested, the intervention did not have a differential impact according to levels of personal resources (self-esteem, mastery, and optimism). However, for all outcomes and regardless of group, participants high in personal resources reported better adjustment across time.
·         CONCLUSION: Even though the hypotheses were only partially supported, the findings provide preliminary evidence that multimedia interventions can be supportive.
·         PRACTICE IMPLICATIONS: With increasing numbers of new cancer diagnoses, cancer survivors and more limited health care resources, further research is needed to evaluate potential benefits of health information technology in providing support to individuals facing cancer.


PSYCHOSOCIAL IMPACYT OF COMPLETING TREATMENT[19]
·         OBJECTIVE: To review the results of any published research study examining the psychosocial functioning of children who have recently completed cancer treatment.
·         METHODS: Five electronic databases were searched (from 1978 to 2008). Of 1,734 identified articles, 19 met all inclusion criteria. Four articles utilized a qualitative methodology, thirteen utilized a quantitative methodology, and two used mixed methods.
·         RESULTS: Children may experience positive psychosocial outcomes on treatment completion, including high self-worth, good behavioral conduct, and improved mental health and social behavior. However, they may also experience significant negative outcomes, including lower levels of psychological well-being, mood, liveliness, self-esteem, and motor and physical functioning, as well as increased anxiety, problem behaviors, and sleeping difficulties.
·         CONCLUSIONS: Completing treatment can be a psychologically complex time for children as they wait to make the transition from "cancer patient" to long-term "cancer survivor." Further high-quality research targeting the needs of these children is warranted.


POST TREATMENT QUALITY OF LIFE: PSYCHOSOCIAL FACTORS[20]
·         OBJECTIVE: The aim of this study was to investigate changes in the quality of life (QoL) and body image among breast cancer patients over 2 years and to examine different predictive factors for QoL 2 years after the primary operation.
·         METHODS: A total of 203 women with a primary diagnosis of breast cancer completed the questionnaires 2 weeks and 6, 12, 18, and 24 months after surgery. Quality of Life Questionnaire (QLQ-C30), Breast Cancer Specific Quality of Life Questionnaire Module (QLQ-BR23), Questionnaire on Stress in Cancer Patients (QSC-R23), Freiburg Personality Inventory (FPI-R), Life Orientation Test (LOT) were used as standardized measures.
·         RESULTS: The overall QoL and most functional and symptom scales improved during the 2-year period. However, cognitive functioning, body image, and the three symptom scales of insomnia, constipation, and diarrhea did not change. Age was only capable of predicting physical functioning, whereas tumor size, axillary surgery, and adjuvant chemotherapy were not predictive of the long-term QoL functional scores. Initial distress was the most potent predictive factor for long-term QoL. Baseline functioning predicted functional QoL scores 2 years later. And higher scores for neuroticism were associated with a poorer QoL. However, optimism was not capable of predicting the QoL 2 years later.
·         CONCLUSION: Screening measures should be implemented at the time when breast cancer is diagnosed, in order to identify psychologically vulnerable patients and offer them professional psycho-oncological help.


NOTES


[9]   Tsai MH1, Hsu JF, Chou WJ, Yang CP, Jaing TH, Hung IJ, Liang HF, Huang HR, Huang YS. Psychosocial and emotional adjustment for children with pediatric cancer and their primary caregivers and the impact on their health-related quality of life during the first 6 months. Qual Life Res. 2013 Apr;22(3):625-34.

[10]  Galica J, Rajacich D, Kane D, Pond GR. The impact of chemotherapy-induced cognitive impairment on the psychosocial adjustment of patients with nonmetastatic colorectal cancer. Clin J Oncol Nurs. 2012 Apr;16(2):163-9.

[14]   Lai JS1, Garcia SF, Salsman JM, Rosenbloom S, Cella D. The psychosocial impact of cancer: evidence in support of independent general positive and negative components. Qual Life Res. 2012 Mar;21(2):195-207.