Evidence map›Paper›PMID 32377551›Full record

ArticleJournal of patient-centered research and reviews2020

Giving Credence to the Experience of X-Linked Hypophosphatemia in Adulthood: An Interprofessional Mixed-Methods Study.

Melissa Hughes, Carolyn Macica, Catherine Meriano, Maya Doyle

Open access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient-centered research and reviews, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed, 1 pooled it
3.2field-weighted citation impact, top 7% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

20 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.

  1. Guideline
  2. Article
  3. Observational
  4. Article
  5. The role of GDF5 in regulating enthesopathy development in the Hyp mouse model of XLH.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2024
    Article
  6. Article
  7. Article
  8. Review
  9. Article
  10. Article
  11. Musculoskeletal Comorbidities and Quality of Life in ENPP1-Deficient Adults and the Response of Enthesopathy to Enzyme Replacement Therapy in Murine Models.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2022
    Article
  12. Article
  13. Article
  14. Article
  15. An Expert Perspective on Phosphate Dysregulation With a Focus on Chronic Hypophosphatemia.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2022
    Article
  16. Article
  17. Article
  18. Review
  19. Article
  20. Challenges of Pediatric Disease in Adulthood.Journal of patient-centered research and reviews · 2020
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors at 1 institution in 1 country.

Melissa HughesFrank H. Netter MD School of Medicine, Quinnipiac University, North Haven, CT.
Carolyn MacicaFrank H. Netter MD School of Medicine, Quinnipiac University, North Haven, CT.
Catherine MerianoOccupational Therapy, School of Health Sciences, Quinnipiac University, North Haven, CT.
Maya DoyleSocial Work, School of Health Sciences, Quinnipiac University, North Haven, CT.
Quinnipiac University · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeX-linked hypophosphatemia (XLH) is a rare X-linked dominant metabolic bone disease, often diagnosed in childhood but causing increasing physical debilitation and pain in adulthood. Physical comorbidities of XLH in adulthood include pervasive and early-onset degenerative arthritis, mineralizing enthesophytes and osteophytes, osteomalacia and pseudofracture, dental abscesses, and hearing loss.

methodsThis mixed-methods analysis included physical findings, diagnostic imaging, occupational and physical therapy assessments, and semi-structured interviews by social work to understand the functional outcomes and lived experience of XLH in adulthood, through connections between qualitative data obtained by social work and occupational therapy with the quantitative findings from other disciplines.

resultsThree primary themes of chronic pain, fear of falling, and lack of credence given by health care providers emerged from qualitative data and could be correlated with physical findings from functional outcome assessments These concerns contrasted with resilience, adaption, and compensation demonstrated by participants.

conclusionsWhile new treatments may ease the burden of disease for adults with XLH, further research, increased provider awareness and education, and further development of standards of care are needed to promote accurate and adequate assessment and intervention for adults with XLH.

Indexed as

endocrinemusculoskeletaloccupational therapypainphysical therapyproviderssocial workX-linked hypophosphatemia

Identifiers

PMID32377551
PMCPMC7197891
OpenAlexW3019070657

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.