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This review of the research literature explored the supportive care needs of cancer patients of varying ages and genders at varying stages of cancer treatment.
Method:
We conducted a search of online databases of peer-reviewed studies published in the English language between 2009 and 2014.
Results:
This paper reviews research studies that explored the supportive care needs of cancer patients through focus groups, surveys, and interviews. The samples addressed varied in age, ethnicity, and gender.
Significance of Results:
One major need identified was the requirement of informational support. Other essential needs included emotional, spiritual, and financial support. Supportive care can be administered in various ways—for example, by religious communities or caregivers as well as providers. However, healthcare providers must recognize the supportive care needs of their patients and incorporate effective resources and interventions into treatment plans.
Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression.
Method:
Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale–21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS–R).
Results:
At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS–R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ2(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05.
Significance of Results:
The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.
We aimed to examine telemedicine as a form of home and additional support for traditional outpatient care as a way to remotely monitor and manage the symptoms of patients with advanced cancer.
Method:
In total, 12 patients were monitored through monthly consultations with a multidisciplinary healthcare team and weekly web conferences. To evaluate and treat pain and other symptoms, the Edmonton Symptom Assessment System (ESAS) was applied during all remote or in-person interviews.
Results:
During monitoring, the team contacted the patients on 305 occasions: there were 89 consultations at the hospital, 19 in-person assistances to the family (without the patient), 77 web conferences, 38 telephone calls, 80 emails, and 2 home visits. The mean monitoring time until death was 195 ± 175.1 days. Eight patients who completed the ESAS in all interviews had lower mean distress symptom scores according to web conferences than in person.
Significance of results:
Telemedicine allowed greater access to the healthcare system, reduced the need to employ emergency services, improved assessment/control of symptoms, and provided greater orientation and confidence in the care given by family members through early and proactive interventions. Web conferencing proved to be a good adjuvant to home monitoring of symptoms, complementing in-person assistance.
Doctor–patient communication in oncology, particularly concerning diagnostic disclosure, is a crucial factor related to the quality of the doctor–patient relationship and the psychological state of the patient. The aims of our study were to investigate physicians' opinions and practice with respect to disclosure of a cancer diagnosis and to explore potential related factors.
Method:
A self-report questionnaire developed for our study was responded to by 120 physicians from Coimbra University Hospital Centre and its primary healthcare units.
Results:
Some 91.7% of physician respondents generally disclosed a diagnosis, and 94.2% were of the opinion that the patient knowing the truth about a diagnosis had a positive effect on the doctor–patient relationship. A need for training about communicating with oncology patients was reported by 85.8% of participants. The main factors determining what information to provide to patients were: (1) patient intellectual and cultural level, (2) patient desire to know the truth, and (3) the existence of family.
Significance of results:
Our results point to a paradigm shift in communication with cancer patients where disclosure of the diagnosis should be made part of general clinical practice. Nevertheless, physicians still experience difficulties in revealing cancer diagnoses to patients and often lack the skills to deal with a patient's emotional responses, which suggests that more attention needs to be focused on communication skills training programs.
An increasing number of older people are living with incurable cancer as a chronic disease, requiring palliative care from specialized healthcare for shorter or longer periods of time. The aim of our study was to describe how they experience daily living while receiving palliative care in specialized healthcare contexts.
Method:
We conducted a qualitative research study with a phenomenological approach called “systematic text condensation.” A total of 21 participants, 12 men and 9 women, aged 70–88, took part in semistructured interviews. They were recruited from two somatic hospitals in southeastern Norway.
Results:
The participants experienced a strong link to life in terms of four subthemes: to acknowledge the need for close relationships; to maintain activities of normal daily life; to provide space for existential meaning-making and to name and handle decline and loss. In addition, they reported that specialized healthcare contexts strengthened the link to life by prioritizing and providing person-centered palliative care.
Significance of results:
Older people with incurable cancer are still strongly connected to life in their daily living. The knowledge that the potential for resilience remains despite aging and serious decline in health is considered a source of comfort for older people living with this disease. Insights into the processes of existential meaning-making and resilience are seen as useful in order to increase our understanding of how older people adapt to adversity, and how their responses may help to protect them from some of the difficulties inherent to aging. Healthcare professionals can make use of this information in treatment planning and for identification of psychosocial and sociocultural resources to support older people and to strengthen patients' life resources.
The usefulness of the age-adjusted Charlson Comorbidity Index (ACCI) as a gauge of the impact of comorbidity on survival is known in the geriatric population. In palliative care, there is little research studying the correlation between comorbidity and survival in the advanced stages of oncological disease. The aim of our study was to explore the impact of comorbidity, measured with the ACCI, on survival in our patients. Our hypothesis was that higher ACCI scores would be associated with lower survival rates after the first visit.
Method:
We conducted a prospective observational study over one year. Patients were attended by palliative home care teams. The main variables were: survival from metastatic disease after the first visit and ACCI score on the first visit. We also employed a descriptive analysis and a Kaplan–Meier survival analysis, including different ranges of ACCI scores.
Results:
The final sample included 66 subjects. The standard patient was a 76-year-old man with lung cancer who had received chemotherapy. The overall average ACCI score was 10.45. Significant differences were found between the different locations of metastatic disease (greater survivals in breast, ovary, and prostate; p = 0.005) and some treatments (hormone and radiotherapy; p = 0.001 for each), but not from the first visit. We found lower survival rates among lung cancer patients with higher comorbidity (ACCI ≥ 11, p = 0.047), with no differences on other primary locations or overall values.
Significance of results:
The data show that comorbidity measured by the ACCI may be an interesting prognostic factor during the late stages of disease, as we have found in lung cancer. More research is certainly needed.
Adolescents are considered the group most susceptible to negative psychosocial outcomes when faced with a parent's illness. However, there has been extremely limited research on the adolescent's adjustment to advanced parental cancer. The aim of our study was to gain understanding of the experiences of adolescents, in their own words, to gather pilot data about the needs of this population that will be valuable in developing interventions for adolescents facing parental cancer.
Method:
A hermeneutic phenomenological approach was applied using in-depth semistructured interviews to inquire about adolescents' experiences. Some 10 adolescents (7 males, 3 females) aged 14–17 were interviewed.
Results:
Four essential themes about adolescents living with a parent's advanced cancer emerged from the analysis: “life interrupted,” “being there,” “managing emotions,” and “positives prevail.” These findings underscore the significant impact an advanced cancer diagnosis can have on a family unit and suggest that the experience may also have the potential of creating opportunities for growth and well-being. Our findings reinforce previous results that advocate for the importance of family and peer support, positive attitude, and open communication when a family is coping with advanced parental cancer.
Significance of results:
Understanding how adolescents gain strength from their relationships with family and peers offers healthcare professionals an opportunity to have services and strategies in place to foster these relationships.
Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study.
Method:
The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care).
Results:
During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers.
Significance of results:
Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.
The aim of this study was to compare the efficacy and side-effect profile of the typical antipsychotic haloperidol with that of the atypical antipsychotics risperidone, olanzapine, and aripiprazole in the management of delirium.
Method:
The Memorial Delirium Assessment Scale (MDAS), the Karnofsky Performance Status (KPS) scale, and a side-effect rating were recorded at baseline (T1), after 2–3 days (T2), and after 4–7 days (T3). Some 21 cases were case-matched by age, preexisting dementia, and baseline MDAS scores, and subsequently analyzed.
Results:
The baseline characteristics of the medication groups were not different: The mean age of the patients ranged from 64.0 to 69.6 years, dementia was present in between 23.8 and 28.6%, and baseline MDAS scores were 19.9 (haloperidol), 18.6 (risperidone), 19.4 (olanzapine), and 18.0 (aripiprazole). The doses of medication at T3 were 5.5 mg haloperidol, 1.3 mg risperidone, 7.1 mg olanzapine, and 18.3 mg aripiprazole. Over one week, the decline in MDAS scores between medications was equal, and no differences between individual MDAS scores existed at T2 or T3. After one week, the MDAS scores were 6.8 (haloperidol), 7.1 (risperidone), 11.7 (olanzapine), and 8.3 (aripiprazole). At T2, delirium resolution occurred in 42.9–52.4% of cases and at T3 in 61.9–85.7%; no differences in assessments between medications existed. Recorded side effects were extrapyramidal symptoms (EPSs) in haloperidol- and risperidone-managed patients (19 and 4.8%, respectively) and sedation with olanzapine (28.6%).
Significance of Results:
Haloperidol, risperidone, aripiprazole, and olanzapine were equally effective in the management of delirium; however, they differed in terms of their side-effect profile. Extrapyramidal symptoms were most frequently recorded with haloperidol, and sedation occurred most frequently with olanzapine.
Our aim was to examine the characteristics of delirium in the severely medically ill cancer population on the basis of sociodemographic and medical variables, delirium severity, and phenomenology, as well as severity of medical illness.
Method:
All subjects in the database were recruited from psychiatric referrals at Memorial Sloan Kettering Cancer Center (MSKCC). Sociodemographic and medical variables, as well as the Karnofsky Performance Status (KPS) scale and Memorial Delirium Assessment Scale (MDAS) scores were recorded at baseline. Subsequently, these variables were analyzed with respect to the severity of the medical illness.
Results:
Out of 111 patients, 67 qualified as severely medically ill. KPS scores were 19.7 and 30.7 in less severe illness. There were no significant differences with respect to age, history of dementia, and MDAS scores. Although the severity of delirium did not differ, an increased frequency and severity of consciousness disturbance, disorientation, and inability to maintain and shift attention did exist. With respect to etiologies contributing to delirium, hypoxia and infection were commonly associated with severe illness. In contrast, corticosteroid administration was more often associated with less severe illness. There were no differences with respect to opiate administration, dehydration, and CNS disease, including brain metastasis.
Significance of Results:
Delirium in the severely medically ill cancer population has been characterized by an increased disturbance of consciousness, disorientation, and an inability to maintain and shift attention. However, the severity of illness did not predict severity of delirium. Furthermore, hypoxia and infection were etiologies more commonly associated with delirium in severe illness, whereas the administration of corticosteroids was associated with less severe illness.
Although relief from suffering is essential in healthcare and palliative care, few efforts have aimed at defining, operationalizing, and developing standards for its detection, assessment, and relief. In order to accurately explore and identify factors that contribute to suffering, more attention needs to be focused on quality assessment and measurement, not only for assessment purposes but also to test the effectiveness of interventions in relieving suffering. The scope of the present paper is to discuss the strategies that aid in the detection and assessment of the suffering experience in patients with chronic illnesses and/or in palliative care settings, and the dilemmas commonly encountered regarding the quality of available assessment measures.
Method:
A general description of instruments available for suffering assessment is provided. Matters regarding the accuracy of the measures are discussed. Finally, some dilemmas regarding the quality of the measures to screen for and assess suffering are presented.
Results:
There have been some achievements toward adequate suffering assessment. However, a more robust theoretical background is needed, and empirical evidence aimed at supporting it is required. In addition, further examination of the psychometric characteristics of instruments in different populations and cultural contexts is needed.
Significance of results:
An interesting number of assessment measures are now available for use in the palliative care setting, employing innovative approaches. However, further examination and validation in different contexts is required to find high-quality tools for detection of suffering and assessment of the results of intervention.
This study examined changes in health-related quality of life (HRQoL) and quality of care (QoC) as perceived by terminally ill cancer patients and a stratified set of HRQoL or QoC factors that are most likely to influence survival at the end of life (EoL).
Method:
We administered questionnaires to 619 consecutive patients immediately after they were diagnosed with terminal cancer by physicians at 11 university hospitals and at the National Cancer Center in Korea. Subjects were followed up over 161.2 person-years until their deaths. We measured HRQoL using the core 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and QoC using the Quality Care Questionnaire–End of Life (QCQ–EoL). We evaluated changes in HRQoL and QoC issues during the first three months after enrollment, performing sensitivity analysis by using data generated via four methods (complete case analysis, available case analysis, the last observation carried forward, and multiple imputation).
Results:
Emotional and cognitive functioning decreased significantly over time, while dyspnea, constipation, and pain increased significantly. Dignity-conserving care, care by healthcare professionals, family relationships, and QCQ–EoL total score decreased significantly. Global QoL, appetite loss, and Eastern Cooperative Oncology Group Performance Status (ECOG–PS) scores were significantly associated with survival.
Significance of results:
Future standardization of palliative care should be focused on assessment of these deteriorated types of quality. Accurate estimates of the length of life remaining for terminally ill cancer patients by such EoL-enhancing factors as global QoL, appetite loss, and ECOG–PS are needed to help patients experience a dignified and comfortable death.
The factors associated with persistent delirium, in contrast to resolved delirium, have not been studied well. The aim of our present study was to identify the factors associated with delirium resolution as measured by the Memorial Delirium Assessment Scale (MDAS) and functional improvement as measured by the Karnofsky Performance Status (KPS) scale.
Method:
All subjects were recruited from psychiatric referrals at the Memorial Sloan Kettering Cancer Center (MSKCC). The two study instruments were performed at baseline (T1), at 2–3 days (T2), and at 4–7 days (T3). Subjects with persistent delirium were compared to those with resolved delirium in respect to sociodemographic and medical variables.
Results:
Overall, 26 out of 111 patients had persistent delirium. These patients were older, predominantly male, and had more frequently preexisting comorbid dementia. Among cancer diagnoses and stage of illness, brain cancer and terminal illness contributed to persistent delirium or late response, whereas gastrointestinal cancer was associated with resolved delirium. Among etiologies, infection responded late to delirium management, usually at one week. Furthermore, delirium was more severe in patients with persistent delirium from baseline through one week. At baseline, MDAS scores were 20.1 in persistent delirium compared to 17 to 18.8 in resolved delirium (T2 and T3), and at one week of management (T3), MDAS scores were 15.2 and 4.7 to 7.4, respectively. At one week of management, persistent delirium manifested in more severe impairment in the domains of consciousness, cognition, organization, perception, psychomotor behavior, and sleep–wake cycle. In addition, persistent delirium caused more severe functional impairment.
Significance of results:
In this delirium sample, advanced age and preexisting dementia, as well as brain cancer, terminal illness, infection, and delirium severity contributed to persistent delirium or late response, indicating a prolonged and refractory course of delirium, in addition to more severe functional impairment through one week of management.
The manner in which personhood or “what makes you who you are” is conceived is key to the provision of patient-centered care and maintenance of the dignity and quality of life of terminally ill patients. However, there is little agreement on how this pivotal concept ought to be defined. Some have argued in favor of an innate concept of personhood, while others see an individual as a reflection of their familial identity or their conscious function, and all share a common position that personhood is unchanging, and hinges upon the central theme of their respective concepts. The present paper aims to explore a more clinically influenced perspective of personhood.
Method:
We report the case of a 42-year-old Malay Singaporean who had been a caregiver for her husband throughout his cancer and then became a cancer patient herself after his passing. This case explores her changing and multifaceted conceptions of personhood throughout her life and illness, and discussions about end-of-life care.
Results:
The patient reports a concept of personhood that encompasses the innate, individual, relational, and societal aspects, which are interlinked and vary in terms of depth and conviction according to the various times in her life and illness.
Significance of results:
Our findings support the ring theory of personhood, which provides a clinically supported model of the conception of personhood that is context dependent and encompasses the four abovementioned aspects.