Underreported use of palliative care and patient-reported outcome measures to address reduced quality of life in patients with calciphylaxis: a systematic review

Riemer, Christie; el‐Azhary, Rokea A.; Wu, Kelly; Strand, Jacob J.; Lehman, Julia S.

doi:10.1111/bjd.15702

Cited by 25 publications

(28 citation statements)

References 22 publications

(26 reference statements)

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“…These findings are similar to observations in the literature. A systematic review of 12 calciphylaxis studies concluded that there was no formal study of palliative care in patients with calciphylaxis, illustrating the need for the development of a calciphylaxis specific patient-reported outcome measure which would help to prompt earlier and more frequent palliative care consultations [ 9 ]. The utility of palliative care consultations in the end of life care of 24 ESRD patients with calciphylaxis was reported by Olarinan et al This study showed palliative care physicians were consulted in only 50% of the patients, with 54% receiving intensive care admission during the terminal phase of their illness.…”

Section: Discussionmentioning

confidence: 99%

“…Available evidence suggests that pain management in calciphylaxis is unsatisfactory with differing practice across the United Kingdom (UK) and internationally [ 9 ]. A knowledge and practice survey was conducted to obtain information on physicians current practice of the management of pain in patients with calciphylaxis in the UK and the Republic of Ireland.…”

Section: Introductionmentioning

confidence: 99%

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Pain management in patients with end-stage renal disease and calciphylaxis- a survey of clinical practices among physicians

et al. 2020

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Background Calciphylaxis is a rare condition usually seen in patients with end-stage renal disease. Pain is a hallmark of this condition and can be extremely difficult to control. Anecdotal data suggests that pain management in calciphylaxis is challenging with variable approaches across the United Kingdom (UK) and internationally. A knowledge and practice survey was conducted to establish current practice in the management of pain in patients with calciphylaxis, in the UK. Based on the results and clinical experience the authors suggest a clinical practice guideline. Methods An online questionnaire was circulated among physicians (renal and palliative care) involved in the management of pain in calciphylaxis. The questionnaire included a mix of open-ended questions and questions with drop down options. Results One hundred and six clinicians responded to the survey of which 60 (57%) respondents were from palliative medicine; the remaining 46 (43%) were from renal medicine. 31 (30%) respondents across both specialties had not encountered any patients with a diagnosis of calciphylaxis (renal-2, palliative care-29). A referral to the palliative care team was undertaken by 18% of renal physicians, 32% referred to the pain team and 50% referred to both. Only 3% of the palliative medicine respondents indicated that they had received a referral from the renal team at the time of diagnosis. Opioids were the preferred initial drug of choice for the management of all types of pain. Paracetamol was universally selected as the preferred first-choice adjuvant agent for management of all types of pain. The importance of advance care planning was highlighted with 72% undertaking advanced care planning discussions often or most of the time. Conclusion There was wide variation in the current practice of pain management in patients with calciphylaxis, with variation between renal specialists and palliative care specialists. Referral to specialists in pain management is not universal despite the severe nature of the pain experienced by patients with calciphylaxis. The data generated has facilitated the development of a clinical practice guideline to support complex pain management in a group of patients with multiple comorbidities.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Pain management in patients with end-stage renal disease and calciphylaxis- a survey of clinical practices among physicians

et al. 2020

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“…These ndings are similar to observations in the literature. A systematic review of 12 calciphylaxis studies concluded that there was no formal study of palliative care in patients with calciphylaxis, illustrating the need for the development of a calciphylaxis speci c patient-reported outcome measure which would help to prompt earlier and more frequent palliative care consultations (9). The utility of palliative care consultations in the end of life care of 24 ESRD patients with calciphylaxis was reported by Olarinan et al This study showed palliative care physicians were consulted in only 50% of the patients, with 54% receiving intensive care admission during the terminal phase of their illness.…”

Section: Discussionmentioning

confidence: 99%

“…sodium thiosulphate, cinacalcet, and antibiotics), surgical (e.g. parathyroidectomy, wound debridement, and amputation) and modi cation of dialysis regimens such as varying dialysate calcium concentrations and increasing dialysis frequency (5)(6)(7)(8)(9).…”

Section: Introductionmentioning

confidence: 99%

Pain management in patients with end-stage renal disease and calciphylaxis- A survey among physicians and clinical practice recommendations

Chinnadurai

Sinha

Lowney

et al. 2020

Preprint

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Background Calciphylaxis is a rare condition usually seen in patients with end-stage renal disease. Pain is a hallmark of this condition and can be extremely difficult to control. Anecdotal data suggests that pain management in calciphylaxis is challenging with variable approaches across the United Kingdom (UK) and internationally. A knowledge and practice survey was conducted to establish current practice in the management of pain in patients with calciphylaxis, in the UK. Based on the results and clinical experience the authors suggest a clinical practice guideline.Methods An online questionnaire was circulated among physicians (renal and palliative care) involved in the management of pain in calciphylaxis. The questionnaire included a mix of open-ended questions and questions with drop down options. Results One hundred and six clinicians responded to the survey of which 60 (57%) respondents were from palliative medicine; the remaining 46 (43%) were from renal medicine. 31 (30%) respondents across both specialties had not encountered any patients with a diagnosis of calciphylaxis (renal-2, palliative care-29). A referral to the palliative care team was undertaken by 18% of renal physicians, 32% referred to the pain team and 50% referred to both. Only 3% of the palliative medicine respondents indicated that they had received a referral from the renal team at the time of diagnosis. Opioids were the preferred initial drug of choice for the management of all types of pain. Paracetamol was universally selected as the preferred first-choice adjuvant agent for management of all types of pain. The importance of advance care planning was highlighted with 72% undertaking advanced care planning discussions often or most of the time.Conclusion There was wide variation in the current practice of pain management in patients with calciphylaxis, with variation between renal specialists and palliative care specialists. Referral to specialists in pain management is not universal despite the severe nature of the pain experienced by patients with calciphylaxis. The data generated has facilitated the development of a clinical practice guideline to support complex pain management in a group of patients with multiple comorbidities.

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“…CUA, also referred to as calciphylaxis, is a thrombotic disorder of the skin and subcutaneous tissue [7,8]. Reported patient symptoms included pain, skin lesions, and pruritus [9]. STS is one of the cornerstones of calciphylaxis therapy and has been used for over 10 years for this indication, although this use remains off-label [9].…”

Section: Introductionmentioning

confidence: 99%

Therapeutic effect of intravenous sodium thiosulfate for uremic pruritus in hemodialysis patients

et al. 2020

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Objectives: This study aimed to compare the efficacy of intravenous sodium thiosulfate (IV STS) with that of loratadine in the treatment of uremic pruritus in hemodialysis (HD) patients. Methods: This retrospective study included 44 HD patients with pruritus aged over 18 years between June 2018 and January 2020 at the Aerospace Center Hospital of China. Twenty-four HD patients received 3.2 g IV STS treatment three times per week at the end of each HD session for 8 weeks. Twenty HD patients received loratadine (10 mg/day) for 8 weeks. Pruritus intensity was measured using a visual analog scale (VAS) and the detailed pruritus score (DPS) at three time points. The safety of STS was evaluated according to adverse event symptoms and biological variable changes. Results: There was no significant difference between the STS and loratadine groups in age, sex, characteristics of pruritus, or other clinical variables before treatment. After 8 weeks of treatment, the VAS score (7.07 ± 2.56 and 2.67 ± 2.01) and DPS (30.72 ± 4.81 and 8.04 ± 2.86) decreased significantly in the STS group (p < 0.05). The mean decrease in VAS score (6.89 ± 1.98 and 6.34 ± 2.35) and DPS (28.90 ± 3.24 and 26.92 ± 2.41) in the loratadine group was not statistically significant (p > 0.05). There were no morbidities or mortalities associated with the use of either drug. All biological variables remained stable after therapy. Conclusions: STS can improve uremic pruritus in HD patients. However, literature on the subject remains lacking. Close monitoring for adverse effects is advised.

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Underreported use of palliative care and patient-reported outcome measures to address reduced quality of life in patients with calciphylaxis: a systematic review

Cited by 25 publications

References 22 publications

Pain management in patients with end-stage renal disease and calciphylaxis- a survey of clinical practices among physicians

Pain management in patients with end-stage renal disease and calciphylaxis- a survey of clinical practices among physicians

Pain management in patients with end-stage renal disease and calciphylaxis- A survey among physicians and clinical practice recommendations

Therapeutic effect of intravenous sodium thiosulfate for uremic pruritus in hemodialysis patients

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