Evaluating Supportive Care for Children With Cancer: A Multi-Institutional Survey Study of Pediatric Oncology Patients and Parents
Condition: Pediatric Cancer
Study type: Observational

Summary: 
      Background:

      - Palliative care, also known as comfort care, is intended to keep a patient comfortable by
      focusing on pain and symptom management to improve quality of life. Although palliative care
      has been demonstrated to be beneficial, it is underutilized in children who have been
      diagnosed with cancer, because current trends favor palliative care primarily at the end of
      life and in only a small number of patients. Children with cancer likely would benefit from
      the incorporation of palliative care from the time of diagnosis, but both doctors and
      families are often reluctant to include it for a variety of reasons. Researchers are
      interested in understanding these reasons to determine better ways to include palliative care
      as part of cancer treatment methods in children with cancer.

      Objectives:

      - To collect information on pediatric oncology patients and their parents attitudes towards
      palliative care, along with cancer treatment, from the time of diagnosis.

      Eligibility:

        -  Children and adolescents between 10 and 17 years of age who have been diagnosed with
           cancer in the past year.

        -  Parents of eligible children.

      Design:

        -  Participants will complete a 30-minute survey about experiences with pain, symptom
           management, and focus on quality of life in the first month following cancer diagnosis.
           Child participants will be asked about their views on the importance of quality of life
           in the beginning of their illness, as well as their attitudes toward symptom-oriented
           care. Parent participants will be asked questions about their child s illness, which
           includes understanding, discussion, and impact of illness.

        -  Treatment will not be provided as part of this protocol.
    

Detailed description: 
      Background:

        -  Palliative care, while demonstrated to be beneficial, is underutilized in pediatric
           oncology.

        -  The current model in the U.S. favors palliative care involvement primarily at the end of
           life and only in a fraction of patients.

        -  Children with cancer likely would benefit from the incorporation of palliative care from
           the time of diagnosis.

        -  Obstacles to the incorporation of palliative care from the time of diagnosis include the
           possibility that the current model provides sufficient care in these areas and the
           possibility that families may be averse to early palliative care involvement on the
           grounds that it would be intrusive, detract from their goal of cure, and/or lead to a
           loss of hope.

        -  To gather data relevant to evaluating these potential obstacles, we plan to interview
           pediatric oncology patients and their parents to determine their views regarding
           provision of palliative care, along with cancer therapy, from the time of diagnosis.

      Objectives:

        -  Primary

             -  To assess parent and patient attitudes toward the integration of palliative care in
                pediatric oncology patients from the time of diagnosis.

             -  To develop a survey instrument that can reliably assess the views of pediatric
                oncology patients and their parents with regard to patients symptom burden and
                management at the beginning of cancer therapy as well as attitudes toward early
                integration of palliative care with oncology care.

        -  Secondary/Specific Objectives

             -  To assess the degree and effect of negative symptoms in children with cancer in the
                beginning of cancer therapy as well as the extent to which pediatric patients
                symptoms and suffering at this time are being adequately managed.

             -  To assess the emphasis that families place on quality of life in symptom management
                and treatment decision making as well as the satisfaction with the degree of
                attention given to quality of life by the medical team.

             -  To assess patient and parent attitudes toward palliative care in general and
                receptivity toward pediatric palliative care team involvement from the time of
                diagnosis.

             -  To assess understanding of prognosis and its relationship to parent and patient
                attitudes toward the integration of palliative care in pediatric oncology care from
                the time of diagnosis.

             -  To assess concordance between parents and patients in their attitudes toward the
                integration of palliative care in pediatric oncology patients from the time of
                diagnosis.

      Eligibility:

      -Patients eligible for inclusion will be children diagnosed with an oncologic disease at
      least 1 month and no greater than 1 year prior with age at diagnosis of 10 to 17 years. Both
      patient and parent must agree to participate to be eligible for inclusion.

      Design:

        -  Surveys will be administered to consenting patient/parent pairs with the parent
           completing a written survey while the patient is surveyed in the absence of the
           participating parent.

        -  Total enrollment will be a minimum of 70 subject pairs and a maximum of 110 subject
           pairs with a target goal of 100 subject pairs enrolled over a 6 month period.

      Data collected from responses to the surveys will be analyzed at the conclusion of the survey
      period to assess for individual content as well as concordance between the patients and their
      parents.
    

Time perspective: Other
Keywords: Palliative Care; Survey; Quality of Life; Attitudes; Pediatric Cancer