Pub Date : 2020-04-01DOI: 10.1017/S1478951519000671
Christiane Kreyer, J. Bükki, S. Pleschberger
Abstract Objective The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. Method A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. Results The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called “KOMMA” was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers’ needs at the cost of the patients. Significance of results A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.
{"title":"Development of a German version of the Carer Support Needs Assessment Tool (CSNAT): The process of translation and cultural adaptation","authors":"Christiane Kreyer, J. Bükki, S. Pleschberger","doi":"10.1017/S1478951519000671","DOIUrl":"https://doi.org/10.1017/S1478951519000671","url":null,"abstract":"Abstract Objective The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity. Method A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis. Results The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called “KOMMA” was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers’ needs at the cost of the patients. Significance of results A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"21 1","pages":"193 - 198"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76505821","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-04-01DOI: 10.1017/S1478951519000658
Hideki Onishi, Takashi Okabe, Nozomu Uchida, S. Shirotake, M. Todo, M. Oyama, Mayumi Ishida
Abstract Background Nivolumab has become an effective treatment option for cancer in various sites; however, this drug may cause immune-related adverse effects due to its mechanism of action. Furthermore, little has been reported on thiamine deficiency (TD) in patients receiving nivolumab treatment. Method From a series of cancer patients, we reported a patient with recurrent renal cell carcinoma who developed TD after the start of nivolumab treatment. Results A 74-year-old man with recurrent renal cell carcinoma was referred to the psycho-oncology department as he had lost about 4 kg and displayed a loss of energy after four cycles of nivolumab treatment. Psychiatric interviews revealed a decrease in energy. Neurological examination did not reveal any impairment in consciousness, ataxia, or ocular symptoms. He did not develop appetite loss. The malabsorption or overconsumption of some nutrients is thought to occur due to the rapid loss of weight; thus, a reduction in vitamin B1, which has a short storage period in the body and is often deficient in cancer patients, was suspected. The diagnosis of TD was supported by the patient's abnormally low serum thiamine level. Significance of results In patients treated with nivolumab, it is necessary to pay careful attention to TD when proceeding with the treatment. It is hoped that future research may reveal the link between nivolumab administration and TD.
{"title":"Thiamine deficiency in a patient with recurrent renal cell carcinoma who developed weight loss with normal appetite and loss of energy soon after nivolumab treatment","authors":"Hideki Onishi, Takashi Okabe, Nozomu Uchida, S. Shirotake, M. Todo, M. Oyama, Mayumi Ishida","doi":"10.1017/S1478951519000658","DOIUrl":"https://doi.org/10.1017/S1478951519000658","url":null,"abstract":"Abstract Background Nivolumab has become an effective treatment option for cancer in various sites; however, this drug may cause immune-related adverse effects due to its mechanism of action. Furthermore, little has been reported on thiamine deficiency (TD) in patients receiving nivolumab treatment. Method From a series of cancer patients, we reported a patient with recurrent renal cell carcinoma who developed TD after the start of nivolumab treatment. Results A 74-year-old man with recurrent renal cell carcinoma was referred to the psycho-oncology department as he had lost about 4 kg and displayed a loss of energy after four cycles of nivolumab treatment. Psychiatric interviews revealed a decrease in energy. Neurological examination did not reveal any impairment in consciousness, ataxia, or ocular symptoms. He did not develop appetite loss. The malabsorption or overconsumption of some nutrients is thought to occur due to the rapid loss of weight; thus, a reduction in vitamin B1, which has a short storage period in the body and is often deficient in cancer patients, was suspected. The diagnosis of TD was supported by the patient's abnormally low serum thiamine level. Significance of results In patients treated with nivolumab, it is necessary to pay careful attention to TD when proceeding with the treatment. It is hoped that future research may reveal the link between nivolumab administration and TD.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"41 1","pages":"241 - 243"},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75873947","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-02-01DOI: 10.1017/S1478951519000592
Marie-Louise Möllerberg, K. Årestedt, A. Sandgren, E. Benzein, K. Swahnberg
Abstract Objectives For patients’ entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. Methods Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. Results Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61). Significance of Results The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families’ needs and ability to live with cancer in the palliative stage.
{"title":"Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members","authors":"Marie-Louise Möllerberg, K. Årestedt, A. Sandgren, E. Benzein, K. Swahnberg","doi":"10.1017/S1478951519000592","DOIUrl":"https://doi.org/10.1017/S1478951519000592","url":null,"abstract":"Abstract Objectives For patients’ entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. Methods Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. Results Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61). Significance of Results The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families’ needs and ability to live with cancer in the palliative stage.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"62 1","pages":"24 - 32"},"PeriodicalIF":0.0,"publicationDate":"2020-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78156958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-02-01DOI: 10.1017/S1478951519000579
C. Ibáñez del Prado, J. A. Cruzado, Hector Gonzalez Ordi, Pilar Capilla Ramírez
Abstract Objective The case of a non-oncological patient at the end of his life, admitted to a Palliative Care Unit (PCU), is presented. After a failed attempt to place a central venous catheter (CVC) and another placement of a peripherally inserted central catheter (PICC), the patient exhibited high anxiety regarding a midline catheter (MC) and refused its placement, even though this was necessary for the administration of intravenous drugs to control dyspnea and other complex symptoms that he presented. Method An intervention through clinical hypnosis for successful MC placement and symptom control is described. Result Through clinical hypnosis and interdisciplinary teamwork, it was possible to place a MC, necessary for symptomatic control of a complex patient. Significance of result This case exemplifies hypnosis as a simple procedure that is easy to apply, accepted by the patient, and effective in the implementation of invasive procedures and symptom control in PCUs.
{"title":"Use of hypnosis for the placement of a midline catheter in a patient at the end of life","authors":"C. Ibáñez del Prado, J. A. Cruzado, Hector Gonzalez Ordi, Pilar Capilla Ramírez","doi":"10.1017/S1478951519000579","DOIUrl":"https://doi.org/10.1017/S1478951519000579","url":null,"abstract":"Abstract Objective The case of a non-oncological patient at the end of his life, admitted to a Palliative Care Unit (PCU), is presented. After a failed attempt to place a central venous catheter (CVC) and another placement of a peripherally inserted central catheter (PICC), the patient exhibited high anxiety regarding a midline catheter (MC) and refused its placement, even though this was necessary for the administration of intravenous drugs to control dyspnea and other complex symptoms that he presented. Method An intervention through clinical hypnosis for successful MC placement and symptom control is described. Result Through clinical hypnosis and interdisciplinary teamwork, it was possible to place a MC, necessary for symptomatic control of a complex patient. Significance of result This case exemplifies hypnosis as a simple procedure that is easy to apply, accepted by the patient, and effective in the implementation of invasive procedures and symptom control in PCUs.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"287 1","pages":"113 - 117"},"PeriodicalIF":0.0,"publicationDate":"2020-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83433241","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-02-01DOI: 10.1017/S1478951519000543
A. Cortellini, G. Porzio, V. Cofini, S. Necozione, A. Parisi, F. Peris, G. Ravoni, G. Spinelli, E. Masel, A. Berghoff, C. Ficorella, L. Verna
Abstract Background Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists. Patients and methods The aim of this prospective study was to evaluate the PERSONS score, in both “simultaneous care” and “supportive care” settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator. Results From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49–0.70) and 0.82 (0.75–0.87), respectively, for the home care patients and 0.73 (0.62–0.81) and 0.89 (0.83–0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively. Conclusions The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.
{"title":"The PERSONS score: A new tool for cancer patients’ symptom assessment in simultaneous care and home care settings","authors":"A. Cortellini, G. Porzio, V. Cofini, S. Necozione, A. Parisi, F. Peris, G. Ravoni, G. Spinelli, E. Masel, A. Berghoff, C. Ficorella, L. Verna","doi":"10.1017/S1478951519000543","DOIUrl":"https://doi.org/10.1017/S1478951519000543","url":null,"abstract":"Abstract Background Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists. Patients and methods The aim of this prospective study was to evaluate the PERSONS score, in both “simultaneous care” and “supportive care” settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator. Results From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49–0.70) and 0.82 (0.75–0.87), respectively, for the home care patients and 0.73 (0.62–0.81) and 0.89 (0.83–0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively. Conclusions The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.","PeriodicalId":19953,"journal":{"name":"Palliative and Supportive Care","volume":"23 1","pages":"33 - 38"},"PeriodicalIF":0.0,"publicationDate":"2020-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76536378","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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