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Biomedical subjects

Pamela S Hinds

Publications and source records attributed to Pamela S Hinds.

At least 19 recordsLinked to original sources
PubMed2007

Pleurodesis for effusions in pediatric oncology patients at end of life.

BACKGROUND: Pleurodesis for end-of-life care has been used in adults for decades, but little is known about the usefulness of this technique in improving the quality of care for pediatric patients. OBJECTIVE: To assess whether intractable pleural effusions in pediatric oncology patients at end of life could be sufficiently relieved by pleurodesis. MATERIAL AND METHODS: Eleven pleurodeses were performed with doxycycline in seven pediatric cancer patients (age 3-21 years) with intractable pleural effusions at the end of life. Five patients had unilateral pleurodeses and two had a unilateral followed by bilateral pleurodeses. RESULTS: Respiratory rates decreased in all seven patients (P = 0.016) and aeration improved significantly after chest tube placement (P = 0.033). The chest tubes were placed a median of 1 day before pleurodesis. Eight of nine chest tubes (89%) were removed before discharge at a median of 3 days after pleurodesis. Pain secondary to the pleurodesis lasted 1 day or less. Improvement in the respiratory rate remained after pleurodesis and chest tube removal (P = 0.031). Five of seven patients (70%) were able to leave the hospital to return home. The five patients discharged lived 10 to 49 days (median 19 days) after discharge. CONCLUSION: Pediatric oncology patients with intractable effusions at end of life can have respiratory benefit from pleurodeses and, as a result, are more likely to return home for terminal care.

Adolescent↗
PubMed2007

Assessing functional mobility in survivors of lower-extremity sarcoma: reliability and validity of a new assessment tool.

BACKGROUND: Reliability and validity of a new tool, Functional Mobility Assessment (FMA), were examined in patients with lower-extremity sarcoma. FMA requires the patients to physically perform the functional mobility measures, unlike patient self-report or clinician administered measures. PROCEDURE: A sample of 114 subjects participated, 20 healthy volunteers and 94 patients with lower-extremity sarcoma after amputation, limb-sparing, or rotationplasty surgery. Reliability of the FMA was examined by three raters testing 20 healthy volunteers and 23 subjects with lower-extremity sarcoma. Concurrent validity was examined using data from 94 subjects with lower-extremity sarcoma who completed the FMA, Musculoskeletal Tumor Society (MSTS), Short-Form 36 (SF-36v2), and Toronto Extremity Salvage Scale (TESS) scores. Construct validity was measured by the ability of the FMA to discriminate between subjects with and without functional mobility deficits. RESULTS: FMA demonstrated excellent reliability (ICC [2,1] >or=0.97). Moderate correlations were found between FMA and SF-36v2 (r = 0.60, P < 0.01), FMA and MSTS (r = 0.68, P < 0.01), and FMA and TESS (r = 0.62, P < 0.01). The patients with lower-extremity sarcoma scored lower on the FMA as compared to healthy controls (P < 0.01). CONCLUSION: The FMA is a reliable and valid functional outcome measure for patients with lower-extremity sarcoma. This study supports the ability of the FMA to discriminate between patients with varying functional abilities and supports the need to include measures of objective functional mobility in examination of patients with lower-extremity sarcoma.

Amputation, Surgical↗
PubMed2007

A comparative analysis of functional outcomes in adolescents and young adults with lower-extremity bone sarcoma.

BACKGROUND: Comparison of functional mobility and quality of life is performed in patients with lower-extremity bone sarcoma following either amputation, limb-sparing surgery, or rotationplasty with four different types of outcome measures: (1) an objective functional mobility measure that requires patients to physically perform specific tasks, functional mobility assessment (FMA); (2) a clinician administered tool, Musculoskeletal Tumor Society Scale (MSTS); (3) a patient questionnaire, Toronto Extremity Salvage Scale (TESS); and (4) a health-related quality of life (HRQL) measure, Short Form-36 version 2 (SF-36v.2). PROCEDURE: This is a prospective multi-site study including 91 patients with lower-extremity bone sarcoma following amputation, limb-sparing surgery, or rotationplasty. One of three physical therapists administered the quality of life measure (SF-36v.2) as well as a battery of functional measures (FMA, MSTS, and TESS). RESULTS: Differences between patients who had amputation, limb-sparing surgery, or rotationplasty were consistently demonstrated by the FMA. Patients with limb sparing femur surgery performed better than those patients with an above the knee amputation but similarly to a small number of rotationplasty patients. Several of the more conventional self-report measures were shown to not have the discriminative capabilities of the FMA in these cohorts. CONCLUSION: In adolescents with lower-extremity bone sarcoma, it may be advantageous to consider the use of a combination of outcome measures, including the FMA, for objective functional mobility assessment along with the TESS for a subjective measure of disability and the SF-36v.2 for a quality-of-life measure.

Adolescent↗
PubMed2006

Double-blind, placebo-controlled study of quality of life, hematologic end points, and safety of weekly epoetin alfa in children with cancer receiving myelosuppressive chemotherapy.

PURPOSE: To evaluate the effects of once-weekly epoetin alfa (EPO) on health-related quality of life (HRQOL), hemoglobin (Hb), transfusions, and tolerability in children with cancer. METHODS: Anemic patients 5 years to 18 years of age receiving myelosuppressive chemotherapy for nonmyeloid malignancies, excluding brain tumors, received intravenous EPO 600 units/kg to 900 units/kg or placebo once-weekly for 16 weeks. Patients and parents completed the pediatric health-related quality-of-life generic scales (GS) and cancer-specific scales (CS). RESULTS: One hundred eleven patients received EPO and 111 patients received placebo. Mean final values for GS total score (P = .763 among patients; P = .219 among parents) and CS domain scores (P > or = .238; P > or = .081, respectively) were not significantly different between treatment groups. EPO-treated patients had greater increases in Hb overall (P = .002) and were more likely to be transfusion free after 4 weeks (38.7% v 22.5%; P = .010). Change in Hb was correlated with change in PedsQL-GCS total score in the EPO group (r = 0.242; P = .018), but was not in the placebo group (r = 0.086; P = .430). Adverse events were comparable between treatment groups. CONCLUSION: This study confirmed the tolerability and hematologic benefits of once-weekly EPO in children with cancer. No significant difference in HRQOL was detected between treatment groups, but a significant positive correlation was observed between Hb changes and HRQOL changes in the EPO group. Additional studies are warranted to assess HRQOL when anemia is managed optimally in children with cancer.

Adolescent↗
PubMed2006

Palliative care and pediatrics.

This article reviews the unique challenges of pediatric palliative medicine. These challenges originate from the specific epidemiology of pediatric diseases for which palliative care is indicated and the necessity to provide child-focused, family-oriented, relationship-centered medical care. The emphasis of the ultimate aims of pediatric palliative care is to care for the body, mind, and spirit, to enhance quality of life, and to minimize suffering.

Analgesics, Opioid↗
PubMed2006

Relationships among range of motion, functional mobility, and quality of life in children and adolescents after limb-sparing surgery for lower-extremity sarcoma.

PURPOSE: The study was designed to examine relationships between range of motion (ROM), functional mobility, and quality of life (QL) in patients with lower-extremity sarcoma (LES) after limb-sparing surgery METHODS: Sixty-eight patients with LES (age, 10-26 years) participated. The patients performed hip flexion, hip extension, knee flexion, and knee extension, Timed Up and Down Stairs (TUDS), Timed Up and Go (TUG), nine-minute run-walk (9-min), and completed the QL measure, Short-Form-36 version two (SF-36v2). RESULTS: Significant correlations (p < 0.01) were found between hip extension and SF-36v2 physical component scale (PCS; r = 0.33), TUDS (r = -0.32), TUG (r = -0.33); hip flexion and TUDS (r = -0.31), TUG (r = -0.39), 9-min (r = 0.44); knee flexion and TUDS (r = -0.52), TUG (r = -0.40), 9-min (r = 0.37); SF-36v2 PCS and TUDS (r = -0.56), TUG (r = -0.51), 9-min (r = 0.60). CONCLUSION: ROM correlates with functional mobility and QL in patients with LES after limb-sparing surgery. ROM exercises are important component of a physical therapy program for children and adolescents with LES.

Adolescent↗
PubMed2006

Advances in defining, conceptualizing, and measuring quality of life in pediatric patients with cancer.

PURPOSE/OBJECTIVES: To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Society's State-of-the-Knowledge Conference on QOL. DATA SOURCES: Published research, clinical papers, and hospital policies. DATA SYNTHESIS: QOL ratings from children and adolescents are being solicited increasingly in research and clinical assessments during treatment and survivorship using various methods but are not solicited from terminally ill patients; qualitatively induced models of pediatric cancer-related QOL now are being tested using quantitative methods. CONCLUSIONS: Children aged five years and older are able to report their cancer-related QOL; reliable and valid QOL instruments exist for all phases of treatment except end of life. IMPLICATIONS FOR NURSING: Nurses can involve children and adolescents in rating their QOL for research and clinical purposes and can apply theory-based QOL models to direct care.

Adaptation, Psychological↗
PubMed2005

Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input.

The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.

Adaptation, Psychological↗
PubMed2005

Creating the basis for a breast health program for female survivors of Hodgkin disease using a participatory research approach.

PURPOSE/OBJECTIVES: To learn from female survivors of Hodgkin disease about their perceptions of their current health status and future health risks, self-care practices to prevent or diminish health risks, and what kind of breast health program could benefit them, including the most effective methods and optimal times for learning about breast health. DESIGN: Participatory research using focus groups. SETTING: Urban pediatric cancer center. SAMPLE: 1 African American and 19 Caucasian female survivors of Hodgkin disease aged 16-26 years, diagnosed at least two years before the start of the study, and treated with mantle radiation therapy. Participants were recruited during visits to an outpatient clinic. METHODS: Six open-ended questions were asked during three separate focus group sessions. Transcribed data were evaluated by content analysis techniques and analyzed to identify common themes. MAIN RESEARCH VARIABLES: Current health status and perceived health risks, current health practices, and effective methods and timing for breast health teaching. FINDINGS: Survivors reported feeling damaged by their cancer and its treatment and perceived that they were at risk for breast cancer. Self-care and risky behaviors also were reported. Internal influences (e.g., fear) and external influences (e.g., family) motivated survivors to participate in health promotion activities. Effective methods identified for learning about breast health included having access to other survivors, being respected as an adult, and having one-on-one staff teaching and peer support. The preferred timing of teaching varied, but survivors generally supported a gradual provision of information. CONCLUSIONS: A positive listening environment is important for developing a breast health program for survivors. An essential first step is to create an opportunity for survivors to tell about their experiences with cancer, including its impact on their lives. Information regarding breast health must be provided in multiple formats during and after treatment if good practices are to be undertaken. IMPLICATIONS FOR NURSING: The provision of adequate information during and after therapy as well as peer counseling in a positive listening environment are important in helping survivors participate in health promotion activities.

Adolescent↗
PubMed2005

Sleep wake disturbances in people with cancer and their caregivers: state of the science.

PURPOSE/OBJECTIVES: To review the state of the science on sleep/wake disturbances in people with cancer and their caregivers. DATA SOURCES: Published articles, books and book chapters, conference proceedings, and MEDLINE, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and the Cochrane Library computerized databases. DATA SYNTHESIS: Scientists have initiated studies on the prevalence of sleep/wake disturbances and the etiology of sleep disturbances specific to cancer. Measurement has been limited by lack of clear definitions of sleep/wake variables, use of a variety of instruments, and inconsistent reporting of sleep parameters. Findings related to use of nonpharmacologic interventions were limited to 20 studies, and the quality of the evidence remains poor. Few pharmacologic approaches have been studied, and evidence for use of herbal and complementary supplements is almost nonexistent. CONCLUSIONS: Current knowledge indicates that sleep/wake disturbances are prevalent in cancer populations. Few instruments have been validated in this population. Nonpharmacologic interventions show positive outcomes, but design issues and small samples limit generalizability. Little is known regarding use of pharmacologic and herbal and complementary supplements and potential adverse outcomes or interactions with cancer therapies. IMPLICATIONS FOR NURSING: All patients and caregivers need initial and ongoing screening for sleep/wake disturbances. When disturbed sleep/wakefulness is evident, further assessment and treatment are warranted. Nursing educational programs should include content regarding healthy and disrupted sleep/wake patterns. Research on sleep/wake disturbances in people with cancer should have high priority.

Antidepressive Agents↗
PubMed2005

End-of-life care preferences of pediatric patients with cancer.

PURPOSE: The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions. PATIENTS AND METHODS: Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions. RESULTS: Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the child's preferences (n = 18 parents); and for physicians, the patient's prognosis and comorbid conditions (n = 14 physicians). CONCLUSION: These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.

Adolescent↗
PubMed2005

Creating a novel structure for nursing research in a cooperative clinical trials group: the Children's Oncology Group experience.

OBJECTIVE: To describe a novel structure designed to integrate nursing research into the Children's Oncology Group (COG). DATA SOURCES: Review articles, reports, and newsleters. CONCLUSION: A new structure using nurse researcher-advanced practice nurse dyads has succesfully integrated nurse researchers into COG scientific activity, as evidenced by the development of concept proposals, companion protocols, nursing objectives in therapeutic trials, and nurse-led publications. IMPLICATIONS FOR NURSING PRACTICE: This provides a promising method for integrating nurse researchers and increasing multidisciplinary research collaboration in cooperative oncology group.

Clinical Nursing Research↗
PubMed2005

Collaborative clinical research on end-of-life care in pediatric oncology.

OBJECTIVES: To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers. DATA SOURCES: Professional group position papers and guidelines; research studies. CONCLUSION: Studies to date in pediatric EoL care used retrospective, descriptive, or pilot intervention designs, have been conducted in single-institution settings, and have included small numbers of patients. Most studies have explored perspectives of parents and health care professionals but have omitted the perspective of the dying child. IMPLICATIONS FOR NURSING PRACTICE: Advancing the science of EoL care will depend on intervention-based clinical trials that include the perspective of the dying child in addi tion to parents and health care professionals.

Adolescent↗
PubMed2005

End-of-life care for children and adolescents.

OBJECTIVES: To describe the complexities in end-of-life care of children and adolescents dying cancer-related deaths. DATA SOURCES: Research studies, review articles, and government reports. CONCLUSION: The complexities in providing competent and compassionate care to the dying child and the family is intense, undeniable, and may in some clinical situations be unavoidable. IMPLICATIONS FOR NURSING PRACTICE: It is important for all those involved with the care at the end of life for a child or adolescent dying a cancer-related death create the framework that will support the provikion of competent and compassionate end-of-life care.

Adolescent↗
PubMed2005

Cancer-related deaths in children and adolescents.

BACKGROUND: To add to the data regarding the quality of care given to dying children and their families. OBJECTIVE: To develop baseline of end-of-life care at a single pediatric facility to evaluate institution-wide palliative care initiative. DESIGN: Retrospective chart review of all known deaths during an 18-month time period. SETTING/SUBJECTS: One hundred forty-five charts of patients from a single pediatric cancer facility who died during designated time period. MEASUREMENTS: Variables included: cause and place of death; CPR/DNR status prior to death; length of end of life care prior to death; sibling counseling and bereavement counseling offered to family after death; and wishes or preferences of patient/family regarding the death experience. RESULTS: Results included: solid tumor patients more likely to die of progressive disease than leukemia or bone marrow transplant patients; bone marrow transplant patients 2-3 times more likely to die of cardiopulmonary or cardiovascular complications; solid tumor patients were more likely to die at home than leukemia patients; solid tumor/brain tumor patients had a median time in end of life or palliative care of 29 days compared to leukemia patients' median of 11 days; 48% of DNRs completed 11 days prior to death. CONCLUSIONS: Relationship exists between diagnosis, cause and place of death in this population; findings replicate findings of 4 similar studies; accurate and consistent quality standards of care need to be established for this population as well as methods of documentation before reviewing/accrediting agencies impose standards that are not evidence based.

Adolescent↗
PubMed2005

Key factors affecting dying children and their families.

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.

Adolescent↗